Balloons

I have this vision...

It is four and a half years from now in my backyard in Allen, Texas.

You are there, and I am there too. It is three years past the median survival time for someone with my diagnosis- and I am alive.

We are in my backyard celebrating David's first five years of life. You and I go and untie one of the many balloons on my iron fence. You read my handwriting on the piece of paper tied to your balloon. Yours says- "Doctors telling me I had 'No Evidence of Disease'". Mine says- "David born healthy with no time in the NICU".

We look around and the backyard is filled with friends and family- hundreds of people, everyone who has walked with us on this journey, all waiting their turn to untie a balloon and read the miracle attached to it. Brad attempts to get everyone's attention once all the balloons have found owners. He has to use a megaphone to be heard above the commotion.  

Brad shares a simple prayer, "God, we praise you for five years of watching you perform miracle after miracle. We praise you that you have spared Ashleigh's life."

And with that, you let go of your balloon, and we watch as hundreds of balloons fill the sky.

"With man this is impossible, but with God all things are possible." -Matt 19:26

MDA makes me tired...

Brad and I traveled down to MDA on Monday to get an ultrasound and meet with a nurse practitioner (the doctor was out of town). The short story is that my primary tumor decreased, but I still have a boat-load of satellite tumors and lymph node involvement: axillary (armpit), infra (under the collar bone), supra (above the collar bone), and lower neck. Technically this is all still considered regional metastases and not distant metastases. Regional means your cancer is advanced but still potentially curable. Distant means you will never be able to get every single cancerous cell out of your body.

So while stable lymph nodes and a slight decrease in tumor size is definitely better than "your disease has significantly progressed" (like I heard last time), it wasn't the awesome news I was hoping for. I thought I felt more of a change in the tumor size than the ultrasound revealed.

Another piece of good news was from the radiologist. She heard I was concerned about cross lymph nodes and went back through all the scans I've had done at MDA and confirmed that I have not had malignant-looking lymph nodes on any of their scans. Her opinion was that the language on the CT scan from UT Southwestern was denoting that the lymph nodes were benign. So it appears I am still non-(distant)metastatic, for now. I will have another PET scan before my next MDA check-up in six weeks to see if my cancer has spread to my organs/bones and get a different measure of my primary tumor.

Each trip to MDA is sort of a beat down. The loads of appointments on the same day to minimize the time away from home, the delays and waiting time, the long ultrasound process to measure all my extensive disease, the emotional turmoil waiting for results and discussing your situation with nurses and doctors- the whole show leaves you utterly exhausted right before you hit the road for a four hour drive home.  Even when you get (relatively) good news, the trip itself is still a reminder that I have a really terrible disease.

For some reason, this comparably very good news has made me more down than it probably should. I didn't receive any new information this trip, but for some reason this week I've had less hope than I normally do. I think it is because with every chemo treatment and with every drug switch, we are exhausting more and more of the few tools a triple negative breast cancer patient has to fight cancer. And every time my cancer proves unresponsive to a treatment, it becomes that much stronger, bigger, and harder to cure.

I asked my MDA researcher friend (who I just love- she is wicked smart and so incredibly knowledgable), if there was anything good about my type of cancer, any "bright side". She thought about it for a moment, and replied in the scientific way she has about her, "No." So there you have it folks- I have the worst type of breast cancer someone can have.

Right now I feel like I'm strapped to train tracks and there is a freight train headed my direction. I feel like there is nothing I can do to cut the rope and get away in time. Everyone is praying that the train will slow down or miraculously jump the tracks. And I'm told to enjoy my last few minutes before the train runs over me. And be encouraged by the fact that the train is slowing down slightly.  You try not thinking about the train as it moves closer.

I've read the literature, I've talked to experts, I've done the research, and I've come to the conclusion- there is nothing in medicine and science that exists in 2015 that will heal me completely of cancer. If I am healed it will be an absolute miracle. God intervening and literally taking the train off the tracks is the only hope I have of living more than 6-12 months from now.

I want to be in my friend's wedding in June, I want to be at my other friend's wedding in Sept, I want to celebrate my 31st birthday. From where I'm sitting, I'm not sure those things will actually happen for me.

"Though I walk in the midst of trouble, 

you preserve my life; 

you stretch out your hand against the wrath of my enemies, 

and your right hand delivers me. 

The Lord will fulfill his purpose for me; 

your steadfast love, O Lord, endures forever. 

Do not forsake the work of your hands."

-Ps 138:7-8

Lord, I need a miracle. Please come and save my life. Spare me Lord, give me more time with my husband and boys. Only you know the number of my days. I know you are the Great Physician. Let me live. Heal me Lord. 

Cross Lymph Nodes??

During an exam at my last doctor's visit in Dallas, my oncologist discovered she could feel a tiny lymph node on my left side. She reminded me that I had some small cross axillary nodes pop up in a CT scan back in August. At the time I didn't realize "cross" (that is, on the other side from the primary tumor) lymph nodes meant metastatic, so I didn't freak out about it. I was just happy I didn't have cancer in my liver/lung/bones.

Just a few weeks prior to that scan (when the cancer was worse) I had a very thorough ultrasound of my left breast and armpit at MDAnderson. Nothing showed up during that scan. On my most recent PET scan (when the cancer was worse), I had nothing pop up there either.  So it's hard to say if the one CT scan that found "sub-centimeter sized" cross lymph nodes was a fluke, or if the person reporting the scan was just being thorough to mention it, or if it indicated the presence of cancer on that side.

I have heard that sometimes doctors will continue to work in a "curative manner" (as they like to say) on cross lymph nodes, as long as they're axillary (in the armpit) and not behind or above the collar bone. That would mean having an axillary dissection (where they take all the lymph nodes out of your armpit) and radiation on the left side as well as the right. Obviously I would be totally fine with additional surgery and radiation if it continued to give me a chance at being cured.

So that is the big question currently on my mind- did I just go from having a 1% chance at survival to a 0%? For some reason, if I have a 1% chance, it feels like a still have a teeny weeny chance- but 0% means I need to start giving away my things and writing letters for the boys to open on their 18th birthdays.

We head back to MDAnderson next week and will meet with a nurse practitioner (my oncologist is out of town). I'm hoping they will be able to spend more time with me than the doctor normally does and answer more of my questions.

If I find out I'm for sure Stage 4 and therefore "incurable", there will definitely be a mourning process similar to what we went through after first finding out about the diagnosis and when we learned that the tumors had grown through chemo.  Please pray that the latest chemo drugs have been (and will continue to be) effective, and that the cross lymph node my oncologist felt is actually nothing.

I'll leave you with the verse that keeps my mind on Jesus when the fear of dying so soon tries to overwhelm me:

"For God has not given us a spirit of fear, but of power and of love and of a sound mind." 

2 Timothy 1:7

The Start (My 1st Post)

[This was written on June 23rd, 2014- the night of my first ultrasound when I learned I most likely had IBC. The words were written originally just for me to process the news of my breast cancer, but now I thought it might make sense to share it. It is interesting looking back to six months ago and seeing what my initial thoughts were.]

Today was a wonderful and terrible day. So many things went right and one thing went horribly wrong. There were so many answers to prayer today and so many things to be grateful for. 

I am thankful that I listened to my gut telling me that I didn’t have an infection and that my breasts were not doing "normal pregnancy things". 

I am thankful for the staff taking me seriously and treating my case with the urgency that it needs.  

I am thankful that I am finding out this prognosis as early as one can with IBC due to the delayed symptoms. 

I am thankful that my mom could come be with me when I came out of the breast diagnostic center (ultrasound/biopsy). 

I am thankful for being able to get a biopsy the same day as the sonogram and for the rush that all the doctors have put on the pathology report. 

I am thankful for my husband working from home and being able to hold me while we cried together as the weight of the news settled in. 

I am thankful for two healthy boys. 

I am thankful for the time Brad and I had with Noah today- picking him up early from school and going out for ice cream; for the time that Noah and I spent dancing to Brad’s piano music, for chasing bunnies in the backyard with Noah, for feeling well enough to climb stairs, go for a walk around the neighborhood, give Noah a bath, read him books, and sing him to sleep. For being strong enough to pick Noah up and swing him around. 

I am thankful for being 34 weeks along in my pregnancy- the point at which you don’t have to give the baby steroids to help the lungs grow.  

I am thankful for the most loving, thoughtful, considerate, sensitive, caring, strong husband that exists. I can’t think of a more perfect partner to enter into this journey with. 

I am thankful for having a mother and mother-in-law that do not work and will be able to help through this journey. 

I am thankful that my mom is a nurse and will be able to help care for me as I recover from each surgery and treatment. 

I am thankful for a boss that is incredibly supportive and allowed me the space and time to deal with the seemingly endless emotions that today brought. 

I am thankful for friends that care and love me so much and that will be with me each step of the way. 

I am thankful for having a friend that is a radiation-oncologist and gave us the situation straight and saying what the doctors don’t want to say or couldn’t say yet. I think that will really prepare us to hear it when it is real and definitive in the coming weeks. 

I am thankful that the best cancer center in the US is only a 4-hour drive away and that they see more IBC patients than any other center in the US (which is still only 100 a year with how rare of a disease it is).

I am thankful for the lens that this news puts on every aspect of life. It makes you notice the beautiful details of life. It makes you savor each Noah giggle, each kiss from Brad, each kind word from a friend, a hug from your mom, everything turns to a much brighter color when you are trying to soak everything up. You become thankful for so much. 

I am thankful for finding a church home yesterday and the education minister calling at just the right moment to pray with me. 

Most of all I am thankful for the hope I have in Jesus Christ. I’m thankful to know that this world has never been my home. It is tough because technically it is the only thing I’ve experienced, touched with my hands, and seen with my eyes - but my faith allows me to believe that there is something far greater than this broken, sinful earth.  There is a place that I will go, whether it is 6 months or 60 years from now, that will be better and more perfect than anything I can imagine in my feeble mind. I have a peace that is coming from some place outside of myself. I hope that through this trial, and potentially tragedy, that my faith will be strengthened and that it would strengthen those around me. I pray that my non-believing friends would come to know Christ through my battle with cancer and potentially young death. The ultimate goal is for God to be glorified through whatever the journey looks like and whatever the outcome is.

The one terrible part of the day was that the doctors didn’t tell me I was crazy and prove to me why this wasn't IBC. At the end of the day, everyone (including me) believes the results will come back tomorrow as IBC. 

IBC is the most aggressive form of breast cancer with a 35-40% 5-year survival rate. That is really low compared to the average 90% survival rate of all other types of breast cancer. I’m praying #1 that the masses and lymph nodes come back benign, #2 that if they aren’t that it hasn’t spread to other organs or parts of the body, #3 that we will have wisdom and discernment as we make decisions around when to deliver the baby (and whether or not to start chemo while David is still in utero) and what treatment options to pursue. There will be a ton of information thrown at us and I want to make the best decision possible and start treatment as soon as possible. 

While there is so much to be thankful for, at the end of the day I'm still up writing this entry after 2 hours of lying restless in bed. I’m still thinking about leaving Brad alone to raise two very young boys. I’m still thinking about Noah and David not having actual memories of me when they grow up, of not getting to be there for them to guide and teach them, to help them become godly young men, husbands, and fathers.

More than anything I’m ready to fight this cancer so that I can get back to being the best wife and mom that I can be to my family. I’m going to be the 35% that makes it and goes into remission. I’m going to fight and persevere, stay positive and be aggressive and kick cancer in the butt. My God is so much stronger and more powerful than cancer, and he is the great physician. He can heal my body and I will be a shining light for Him along this journey. He alone will give me strength to run this race and finish this journey he has set before us.

So until tomorrow when I get “the phone call” [from the pathologist confirming the preliminary diagnosis of IBC]…I’m going to try and get rest before going into the office and pretending today never happened…good night.

IBC Research - Fundraising Results

Can't we take a moment and talk about how AWESOME y'all are??!? It started with the goal of matching one donor's $2,000 and we ended up raising $12,940 in just ONE week! Thank you to the 73 people that made such generous donations- many of whom I've never even met!

For those that missed out on the campaign (I know, it was a short and busy week)- any time is a great time to give to cancer research, especially for IBC. If you would still like to give, you can donate HERE.

I was completely blown away from family, friends, and strangers that contributed in such a short  amount of time. The IBC Network will be keeping in touch with those that gave to let you know what research projects end up being funded. Thank you for your generosity!!!

Superhero Hair + Quick Update

Hair

My friend Jamie grew up with her hairdresser, Tim, and always sends me pictures of him and his hair-do's. They mostly involve mohawks and crazy colors. He is a father of three, goes to my church, and even cuts our pastor's hair. 

This is Tim with Fergie, who is apparently a regular

With the new chemo my hair should be falling out again sometime this week. Since my hair was going to fall out anyways I thought it might be fun to dye it some crazy color(s). If you knew me prior to cancer, I'm a super conservative, corporate, southern pearls type- not exactly a punk rock emo kid.

I don't really go out much these days, but I have been to wal-mart and the grocery store. I've actually received quite a few compliments from strangers. Kids are the best because they have no filter. Lots of "Mommy! Look at her hair!" and then the mommies shushing their children. It is fun. My favorite comment so far has been that I look like a super-hero. I wish I had super powers and could rid all my friends of cancer, and mine too.

Rock on Baby!

The back is turquoise/teal- it is my favorite part!

Quick Update

Someone was asking my parents if I was okay since I hadn't updated in a while. If you don't see an update, I'd take that as a good sign. I typically post when I need to get something off my chest, need mucho prayers, and/or if stuff is going down. When you don't see a post, that means life is boring and I don't want to bore you. I'm super into boring these days. I crave normalcy.

But for those that like to check the blog (I hear there are people out there that do this- that is mind blowing to me!), I'm doing really well (you know, for being six months into heavy-duty chemo, taking care of two kids under two, and having a horrible cancer). :-)

For a few days after the new chemo my primary tumor was essentially doubling overnight. It was extremely frightening. Brad was taking this latest round of news harder than before, especially while watching the tumor grow so quickly. It was like this was finally becoming real to him. A few months ago I had to remind him that I even had cancer since I was mostly my perky Ashleigh self most days.

Before Christmas, one of my friends was having tingling in her face on one side and the doctors had to check her spinal fluid for cancer (scary!). Then I started having tingling on the right side of my face and my head kept hurting on the right side of my head. I wrote to my doctors at UT southwestern on a Sunday to see if those were symptoms for brain mets (breast cancer that has spread to your brain). Then a few hours later I wrote them again because a spot on the left side of my head kept hurting and my leg was tingling. The nurse wrote back Monday said I needed to take a deep breath and the doctor said it was something very serious called....stress. I can't imagine what had been stressing me out- maybe the super bad news at MDA, doing last-minute stuff for Christmas that had gotten pushed back due to MDA, prepping for my in-laws to come stay with me...who knows?? :-) I love the emails from my doctor calling me crazy instead of, "maybe we should order an MRI to check that out". They are the very, very best!

We got to give our testimony again in another small group at church. That was a very encouraging time. I think it is really helpful to remind ourselves of what we know to be true about God's sovereignty and goodness through this trial. It is a blessing for us to share our story. Someone at the end recommended we record our testimony so that our kids could watch it someday. I think that is a great idea. We are speaking again this Sunday so maybe we will find someone that can tape it! (Do you call it "tape" anymore if there is actually no "tape" involved?)

This new chemo (or maybe just the accumulation of so many months of chemo) seems to be wiping me out more than normal. I find myself needing to lay down multiple times per day. The other night I was laying down and it took me 15 minutes to will myself to get up and lay in the bathtub to soak. Last night I made dinner and by the time it had gotten to the table I had to lay my head down on the table during dinner. This is not my normal speed and what I'm used to. I'm a go-go-goer. That is actually my key skill-set. I'm not that smart or talented, I just am able to typically out-work those around me and that's how I've been quasi-successful. So to go from that to now needing a break to lay down and rest every few hours is quite the blow. I'm trying to be sensitive to what my body needs...but sometimes there are two small children that need taking care of...so yeah, it's a balance.

I've been off chemo since Saturday. I'm pretty nervous about the tumors growing this week. I don't want to lose the ground we've gained over the last two weeks (oh yeah, I probably should have mentioned that- the primary tumor shrunk A LOT with the first round of the new chemo- woohoo!!). If you remember, the tumors had gotten to the point where the doctor couldn't even feel them during a breast exam with the last types of chemo I was on. But then the cancer got resistant to that type of chemo and started growing again the last month. I'm hoping that the cancer doesn't get resistant to this type of chemo. I'm hopeful that this chemo combo will shrink the tumors and lymph nodes and still give me a pathological complete response (pCR- all cancer gone) at surgery. Now that is BIG prayer!

Still hoping, still praying for a miracle.