Chemo Day!

Today started with two dear friends of Ashleigh from the Fellowship class at First Baptist Dallas meeting us at UT Southwestern to pray over Ashleigh before starting treatment.  After that it was upstairs to get signed in and off to a treatment room.  The nurses giving the drugs were awesome - especially since we haven't gotten a port yet, so they had to give it peripherally (through an IV in the arm, instead of the usual way of a catheter directly to the heart).

There is something viscerally satisfying about the bright red color of one of the chemo drugs and the huge yellow warning labels on everything - they have the look of something that should be used in a comic book to bestow super powers.  It's actually a comfort to know that the drugs are so powerful that they are heavily warning-ed and carefully controlled, even in the already carefully regimented world of medical treatments.

We met with several wonderful nurses, a physician's assistant, and dietitian who all had information for us regarding potential side-effects and the litany of support drugs Ash will take over the next few days.  I won't bore you with the details here except to say that we appreciated everyone's patience in translating medical facts into something that the engineering/data-driven framework of our brains could process.

After treatment (~3.5 hrs all told) we drive home and Ash had a nap.  Tonight we had dinner provided by a wonderful couple from First Baptist Allen (lasagna, yum!). 

God is so good - it is unheard-of in "typical" cases (if there is such a thing with regard to cancer) to be diagnosed and begin treatment inside of a week.  We are thankful for doctors, nurses, and administrators expediting every step of the process to get us to the start of chemo today.  We can rest in some measure of peace, knowing that we have started a tactical response to the disease and that as we speak drugs are working on reducing the size of Ashleigh's tumors. 

Ashleigh has been looking forward to today as the day we get to actually DO something to start the fight.  Then, on top of that comfort, the treatment itself was very easy and painless.  Does it get any better than that??

...oh yeah, free snacks :-)

Sunday Prayers

We recently moved to Allen, TX a suburb of Dallas to get more room for our growing family. As part of that move, we decided it might make sense to find a church home closer, that we could be a part of not just on Sundays but throughout the week as well. We only visited First Baptist Allen twice, but knew that was where we were supposed to be.

The day after our second visit to the church, one of the ministers called to follow-up and asked if there was anything they could pray for. Little did she know I had just gotten the biopsy and the sonogram that was indicating IBC. She prayed with me and then told me that the director of the class I had met the day before was a 7-year breast cancer survivor (diagnosed at 25, Stage 3B, double mastectomy, chemo/radiation, the whole bit). There happened to be two events going on with the church that week where we got to connect and learn her story. It gave me such hope. I love that I would meet her the day before all this would break loose. She has been a great comfort, knowing she has been down this road before and God healed her. And she has a daughter Noah’s age- too perfect!

On Saturday night, I sent out emails to many of my friends who I knew would be in churches on Sunday morning asking for prayers from them and their communities. We also announced our news during Bible Fellowship class (a smaller group of people at the church in a similar life stage) and the whole class stopped and prayed over us. The service that day was titled- “It’s okay to be broken” and there was a section of the service devoted just to praying for those who were “broken” (I figured if I had cancer I probably fell in this category). During the service I had this palpable peace come over me. It was like all the muscles in my body could finally release after a week of being incredibly tense. I could feel the hundreds of prayers from across the nation being prayed on Sunday morning for my healing.

The church has welcomed our family with open arms even though we only visited the church a couple of times. It has been an incredible blessing. We hope we are able to give back over time all that they have already done for our family.

We are so thankful for friends and family that have passed my story and need for a miracle on to others who have begun to pray for me. I know God listens to the prayers of His people and it could make the difference between life and death. So thank you to everyone who has committed to pray for me. I am so thankful for you.

Hell week

Tuesday afternoon is when I received the call from my doctor confirming I had high-grade (moving FAST), invasive (it was going EVERYWHERE) carcinoma...aka IBC. I called Julie my friend from high school that is in residency for radiology-oncology (the part of oncology that does the radiation at the end). Her attending had contacts in Dallas at UT Southwestern and called them Wednesday with my story. My doctors over at UT cleared their Thursday schedule to meet with me for what turned into hours (felt like minutes when I was with them though). My oncologist set up a plan for starting chemo the next Monday (the soonest we could do it based on the other tests that still needed to be run). I had a blood test (a couple indicators of potential cancer spread), liver sonogram (see if they could find any cancer spread to there) and an echocardiogram (see if my heart is strong enough for the chemo) on Friday morning.

Late Friday evening Dr. Unni (my oncologist) called with first good news of the week- all the tests came back normal and didn't show any indication of cancer spread (with the limited checks they could perform now). The rest of the normal protocol scans will take place after I deliver. That will give us actual staging and will let us know exactly how big this battle will be, or if there will even be a battle. I'm just continuing to pray that the doctors will keep wanting to treat me and keep believing it is worth it to keep trying stuff and moving forward. That is why a Stage 3B or C diagnosis would be amazing. (Has anyone ever said that before??)

At the same time that week I had doctors through my OB office/hospital system also moving heaven and earth to get me into their schedules and I met with them for a second opinion. It was very encouraging to hear that they had the exact same plan for treatment. They were all super nice; I especially enjoyed my oncologist at Presbyterian Dallas. I left her on Friday with a lot of hope going into the weekend. 

Also at the same time, I was trying my darndest to get into MD Anderson- the leading research institute on cancer in general but also for my specific kind of cancer. They have an IBC clinic that treats over 100 cases a year. I was able to get an appointment with them 2 weeks after diagnosis, which I hear, is very difficult to do. Normally it takes months to get an appointment. I'm thankful for another friend named Rachel that I knew from college that is working there and helped me get connected to the right folks and advocated for me. Next Sunday we will drive to Houston, stay with some of our best friends, and then have an appointment with the IBC clinic director, Dr. Valero. He is one of the leading researchers of IBC and if anyone understands anything about this disease, it is him. 

Brad and I are ridiculously thankful for how extremely fast all the nurses, doctors, lab pathologists, coordinators moved last week. Everyone understood the gravity of my situation and the speed at which my cancer moves/is moving and responded appropriately. For that we are so grateful.

We are also really grateful for the seemingly impossible decisions to make - what team to choose, how to bring in MD Anderson, when to start treatments, when to deliver David, what drugs to start off on, to start chemo with or without a baby - were all really easy. Starting at the beginning of the week I didn't know how we would make these potentially life and death decisions, but by the end of the week everything was crystal clear. Some of our friends and family who we told last week were praying for that specifically, and I know that was an answer to that specific prayer. I'm trusting God to continue leading us where he would have us go and do.

How all this got started

Most people that find out I have breast cancer ask, "So did you find a lump?" because for 99% of breast cancers that is how it works. Inflammatory is in its own special class (anyone surprised that this would be the one I would get? haha). It doesn't show any signs or symptoms until it is late-Stage 3 or 4 (there is no Stage 5). It is misdiagnosed 9 out of 10 times. Because of how aggressively the cancer grows and because of the delay in diagnosis, it has the worst prognosis of all breast cancers. All other BCs have an average 5-yr survival rate of 90%+. This has only a fraction of that if it is still stage 3B or 3C. If I am stage 4 I will have technically an "incurable" disease.

Three weeks ago I noticed one breast increasing in size and getting "fuller". I brought this up during my normal OB exam. I showed no symptoms on the skin. The OB told me that it was part of being pregnant and that it was very normal for one side to grow more quickly than the other. A week later my breast was more tender and something didn't seem right so I went in the OB office again to see if maybe it was a breast infection (mastitis is the most common misdiagnosis). Again, I was told that it probably was just pregnancy related and it should improve over time. It didn't seem like mastitis because I didn't have any chills or fever.

On Friday of that week I finally had a chance to catch my breath and that night I started searching the internet for something that would fit my symptoms. The breast had gotten larger during the week and the skin had begun to change with a very slight peau d'orange. In my searching I found IBC right away. Nothing else would fit the breast growing overnight + skin changes. That night I called my OB in tears saying I think I have IBC, the most aggressive and lethal form of BC, the "silent killer". She calmed me down assuring me that it is so rare and I'm way to young for that to even be a statistical possibility. She was sure that it was something pregnancy related but would order a sonogram on Monday to make me feel better. I spoke with 5 or 6 other medical friends and everyone had the same unanimous response - there is no way that could be, you are crazy.

All weekend I worried about this possibility because I read how terrible the prognosis is. I kept praying that everyone was right - I am crazy. On Monday morning I started calling offices as soon as they opened. By 10AM I had a radiologist telling me it appears to be IBC. I had a biopsy immediately and results back Tuesday afternoon confirming the diagnosis. I was devastated.

What is IBC?

What is Inflammatory Breast Cancer?

Inflammatory breast cancer is a rare and very aggressive disease in which cancer cells block lymph vessels in the skin of the breast. This type of breast cancer is called "inflammatory" because the breast often looks swollen and red, or "inflamed."

Inflammatory breast cancer accounts for 1 to 5 percent of all breast cancers diagnosed in the United States. Most inflammatory breast cancers are invasive ductal carcinomas, which means they developed from cells that line the milk ducts of the breast and then spread beyond the ducts.

Inflammatory breast cancer progresses rapidly, often in a matter of weeks or months. Inflammatory breast cancer is either stage III or IV at diagnosis, depending on whether cancer cells have spread only to nearby lymph nodes or to other tissues as well.

Additional features of inflammatory breast cancer include the following:

• Compared with other types of breast cancer, inflammatory breast cancer tends to be diagnosed at younger ages (median age of 57 years, compared with a median age of 62 years for other types of breast cancer).
• Inflammatory breast tumors are frequently hormone receptor negative, which means that hormone therapies, such as tamoxifen, that interfere with the growth of cancer cells fueled by estrogen may not be effective against these tumors.

*Citation: "Inflammatory Breast Cancer Questions and Answers Sheet." National Cancer Institute at the National Institutes of Health. www.cancer.gov, 2012. Retrieved from Web 17 May 2012.http://www.cancer.gov/cancertopics/factsheet/Sites-Types/IBC.

You can read more at: Cancer.org

Brad's Announcement Email

At the risk of being self-referential, since we want this blog to be a one-stop shop for all things related to our journey, I'm archiving our "announcement" Facebook posts and emails to friends below.

Please forgive us if you didn't hear about Ashleigh's diagnosis until now; ninety percent of our time so far has been developing a plan for the future (insofar as that's possible at this point), and the other ten percent has been trying to enjoy time as a family (especially last weekend). 

Dear Friends,

Last week Ashleigh was diagnosed with a rare, aggressive, and advanced case of breast cancer.  For those who don't frequent Facebook, we are currently 34.5 weeks pregnant with David, and Noah is 17 months old.  The last week has been a week of extremes: very busy meeting with doctors and deciding on a team and treatment plan, very emotional dealing with the reality of the diagnosis, but most of all we have already experienced an amazing depth of God's love and grace.  We have experienced His comforting presence directly through His Spirit, through the attention and confidence of the doctors and nurses, and through the support of family, friends, our local church, and the body of Christ corporate.

We want to be respectful of not clogging your inbox and news feeds, so from this point forward all updates will be posted to a Blog we're updating at www.myjourneywithibc.blogspot.com/.  We will keep you updated there with what is going on, how you can be praying for us, and if we have any specific needs you can help meet.

The only immediate request I have of you is to please be understanding if we can't respond to you directly in a timely manner, whether on Facebook, on the blog, or via texts/calls.  Please send encouraging emails to Ashleigh for her to read during chemo treatments and long wakeful nights, but please avoid calling or texting her directly (you can call/text me with anything urgent).  I hope you know my heart in this -  a husband jealously guarding my wife's time so she can focus on healing and being a mom.

We trust Jesus entirely with our lives and with this journey since he is Sovereign - there is no rogue atom in the entire universe outside of his control.  He is also utterly good - see the blog for stories of  ways he's already proven Himself faithful .  We covet your prayers for our family, for healing, but most of all that we would be faithful witnesses for Christ through this ordeal.  To God be the Glory.

Romans 5:3-8

Love,
Brad, Ashleigh, and Noah

My Journey with Breast Cancer Blog

Hello Friends & Family -

In an effort to keep those who are interested updated on my progress through treatments both physically and emotionally, Brad or I will be posting updates to this blog. You can subscribe to the blog if you want to be notified when there are updates. I'll most likely post to facebook when there are major changes or news to be shared as well. If you would like to share anything with our family, feel free to leave comments or send me a private message. I will always welcome encouragement, scripture, and prayers for me and my family during this time. I might ask too that you please do not forget Brad as he walks through this with me. He will also need lots of encouragement to make it through this journey.

I thank everyone in advance for their prayers and encouragement. I know God will be using you in an mighty and powerful way for me to feel His love through you.

Love,
Ashleigh