Praises + Prayers (4/29)

Praises

+ Completed ten months of intense cancer treatments- doctors were able to find chemo that shrunk the tumors enough to do surgery, getting clear margins (all the cancer out) at surgery, and getting the best possible radiation team for IBC

+ We had the most amazing support over the last ten months - so many months of meals delivered to our house, cards of encouragement showing up nearly every day, inspiring gifts from around the world, servant hearts over at my home each night helping take care of the boys, and most recently parents who watched the boys full time while at MDAnderson for radiation

+ God providing unexplainable peace throughout a very rocky and scary journey, He provided overflowing joy in the midst of what should be the saddest time in my life, He has grown Brad and me, increased our wisdom, and improved our perspective

Prayers

+ That miraculously my cancer would not reappear metastatically (in my organs, skin, bones, or brain)- that somehow I would beat all the odds and not die from this disease

+ That I would be able to enroll in the right trial (most likely a vaccine one) at the right location with the right team - that this might be the way God is able to save me from a recurrence

+ That I would heal quickly (my radiation burns continue to get worse, even after radiation stopped...they said it should start to turn a corner and start improving 1-2 weeks after treatment ended); that I would be able to keep my incision clean and infection free (it has completely opened up- currently the open wound is 12in X 1in); that my skin would stop melting away and that my pain would be decreased/managed

+ That I would know the right balance between doing what needs to be done to take care of my kids and not overdoing it/allowing myself to heal (the kids weigh 22 and 33 lbs now and I'm only "suppose to be" lifting 5-10 lbs- oops!)

+ That my scans in 8 (ultrasound of my neck) and 12 weeks (PET scan) would not find cancer in my neck lymph nodes (that were not removed with surgery) or in the rest of my body; that I would finally be "No Evidence of Disease"

Get busy living

Well folks, after ten months of aggressive cancer treatments, we've concluded the course of treatment defined as the "standard protocol". In other words, we've run out of options where the benefits outweigh the risks for treating my cancer.

Some might rephrase my previous statement to say, "Woohoo! I'm done with my cancer treatments! I've been cured from cancer! Look ma, I beat cancer!"

I, on the other hand, know too much. When you have Stage 3C triple negative IBC, cancer that grows with chemo, a lot of residual cancer at the time of surgery, 26/34 lymph nodes positive with cancer, and remaining nodes in my neck post surgery.....my odds are not good.

So why do I have this crazy peace? Why am I not worried? Why am I so focused on living? On living to the fullest, today?

Well for one, at Christmas-time I wasn't sure I was going to be alive today. So in some ways, I'm just happy I made it to surgery, and then through radiation. It feels like I'm already living on borrowed time (but then, aren't we all?).

Another reason is I know full well that my days were numbered before time began. The Bible says, "You have decided the length of our lives. You know how many months we will live, and we are not given a minute longer." (Job 14:5) I also am fully aware that worrying about recurrence and death is not going to extend my days. "Can any one of you by worrying add a single hour to your life?" (Luke 12:7)

Finally, I'm still in the semi-delusional state that God is going to heal me. Doesn't that sound crazy? How can someone familiar with how stats and data and research work believe that I will be healed (on this side of Heaven, that is)?

God is in the business of doing ridiculous things. There is story after story in the Old Testament where the Israelites should have been slaughtered, where the odds weren't good, when the data indicated they didn't have a shot. One time God even told them to decrease the size of their army so that when they won they couldn't take credit for the win. They would have to give God the glory. (Judges 7)

There isn't anything in the Bible that says I'm definitely going to be cured and live a long happy life with my family. But everything I read tells me that God. is. able. And we are called to "not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own." (Matt 6:34) 

So instead of waiting to see if my cancer is coming back, I'm going to get busy living, today.

One week left of radiation

"Ending" Treatment

Only one week left of radiation...that should make me excited, right? I watch day after day as women "ring the bell" signaling the end of their treatment. They are so thrilled that they made it through all the chemo, surgery, and radiation...to the end.

I don't feel that same excitement about ending treatment. Mostly because I know, treatment will never really be "through" for me. I don't plan to "ring the bell" next week because I will not be free from cancer. When you have my diagnosis, plus my response to chemo, plus as many residual lymph nodes as I had, it means my body is still full of tiny tumors floating around my circulatory and lymphatic systems.

Even tonight, I'm having trouble sleeping while thinking about a small 2mm nodule that I can feel on my chest. This very well may be the recurrence I've been dreading for the past ten months. What if it is a chest wall recurrence and my small glimmer of hope of being cured is finally gone?

I do know that if I have a recurrance, things will progress rapidly. There just simply aren't solutions, medicines, or therapies to help someone with metastatic triple negative breast cancer. It is just a matter of how long it takes for cancer to overcome one or more of your organs that determines how long you will live.

Clinical Trials

If, assuming for a second, I have "No Evidence of Disease" at the end of next week, I will be hoping to start a trial. There is one at MDA I've been excited about since first being diagnosed. I'm not sure if they are still accepting patients and there are several hurdles to overcome, but if I was able to enroll, it would be very exciting.

There is one major downside to the trial- I would have to be post-menopausal.  This would mean surgery to remove my ovaries.

I love babies- I love being pregnant, nursing, changing diapers, playing with, cuddling, rocking to sleep- the whole thing. I was able to get pregnant easily, had easy deliveries, and even nursing was easy. Motherhood seemed the most natural thing in the world for me.

The thought of losing my ability to reproduce- knowing I will never again be able to feel a baby kicking inside me or holding my newborn baby on my chest- is the first time I've really gotten upset about having cancer. In some ways I feel mad that it would, or even could, steal this away from me.

When I think more logically about it, I know it is a small price to pay to continue being a mother to the two beautiful, healthy, and delightful boys I already have. And I know that I'm optimizing all my treatments with only ONE goal in mind- and that is swinging for the fences, go big or go home, a cure from cancer.

So in light of my treatment priorities, having a surgery to go into menopause is simply a no-brainer. I would and will do everything in my power to be here for my boys.

The Boys

Speaking of the boys....man, do I miss them.

It reminds me of the first summer Brad and I were dating. I went to France to study abroad for three months while Brad stayed back in Atlanta to do an internship (and make money for someday, a ring!). I remember how my heart ached being apart from him. It was like half of me was missing being apart from him.

That is how it feels now being away from Noah and David for so long. David went back with Brad's parents to Atlanta for a couple weeks to lighten the load for my parents. I spent last weekend in Florida and missed getting to go home and see Noah. This many weeks away from them makes my heart ache. I can't wait to see Noah this weekend and David the weekend after next.

What I try and remind myself is that 1) the whole reason I'm in Houston and not Dallas is in an effort to survive and be there for them long-term and 2) they are so small they won't remember this, except for the extra bonds they are making with their grandparents right now.

Nice Days

In some ways I'll be sad to see this little chapter come to close. I've loved reconnecting with Brad, spending lots of quality time with Houston friends, resting, reading, exercising. This has been a precious time.

I'm so thankful for all the countless hours people in Dallas and Atlanta have given to make my treatment away from home possible. The support our friends and church family in Allen have given my parents is incredible. There is no way I'll even begin to pay back everyone for all the sacrifices that have been made on our behalf.

I hope they have Crisco in Heaven because I'm going to be making pies waaaay into eternity to ever come close to repaying all that these angels have done for me, Brad, David, Noah, Mom, Dad, and Brad's parents.

<3

IBC- The Good & the Worst

The Good

In these days without kids to look after, I'm trying to enjoy the freedom and flexibility it affords me. Yesterday was a day I was happy to have that flexibility to stick around MDA after my morning radiation.

One-boobed Ashleigh!

A family had raised over $80K through a scavenger hunt event hosted by the IBC Network called the "Hunt for Hope". It was a pleasure speaking with several of the family members, many of whom reminded me of my "old life"- dual career families, young children, well dressed, polished, and poised. I, on the other hand, was just thankful I decided to put on actual pants that morning and not roll into MDA in my PJs (com'n, don't judge me, I'm there for a total of 5 minutes, and it is at 6:30am, you'd do the same thing....right??).

The President of MDA, Dr. Ronald DePinho, and the head of the IBC MDA Clinic, Dr. Naoto Ueno, were there to accept the check from the IBC Network. Dr. DePinho talked about how IBC has historically been an "orphaned disease", meaning that in the midst of tremendous financial resources going towards breast cancer research (for example, in 2012, National Cancer Institute alone spent $600M on breast cancer research), very little to none of the resources have gone to IBC.

I had an opportunity to shake the president's hand, which was a real honor. I've been SO pleased with the level of care I have received at this institution and have been so impressed with the commitment of the employees to the institute's vision of ending cancer.

If I had known I was going to be meeting the MDA President, I might have worn a fake boob, or at least put on makeup.  Still, if you're going to meet the president of any institution as a scrubby cancer patient, the president of MDA is probably the most forgiving.

Before & After

The Worst


After an encouraging morning of a new IBC study getting funded, that afternoon I was jolted back to the harsh reality of inflammatory breast cancer.

My facebook feed was filled with sad messages after the online IBC community received a tough blow. Kore Borman, a wife and mom, passed away at 37 leaving two young boys behind. Her story is much like my own- diagnosed Stage 3 IBC, triple negative, went through treatments and was "No Evidence of Disease". A few months later, she had a seizure after the cancer had begun metastasizing to her brain. She ultimately died from from the cancer in her lungs. All of this, less than three years after her diagnosis.

It is hard to accept that this is most likely my fate as well. I want a different outcome. I'm going to do my best to try different treatments and trials, but ultimately, I have no power to control the spread of my disease. I know God has the power to heal me and grant me a long life with my children, but that doesn't mean that He necessarily will.

Other IBC sisters change their facebook profile picture to a pink angel when a sister passes away. I think I will begin doing this. I hope this isn't too depressing for people, but it is the reality of the disease I have been given.

My Goal

Previous to yesterday, the largest amount raised by a single IBC sister was $40,000. Now it is up to $83,000. I want to be the largest fundraiser ever for IBC research (who is surprised?). We raised $13K over Christmas time, so that is a good start. Watch in the coming months and years - with your help, I want to fund many IBC studies.

No more young mothers should have to face death so soon. We can't let this orphaned disease create any more motherless children. We must find answers, and we must find them soon.

David

Noah

Radiation has begun!

When Brad and I got the news back before Christmas that my cancer had grown through six months of chemo, I figured my chances of getting to surgery were out the window, and getting to radiation was even less likely than that. The week leading up to my first day of radiation, I kept thinking that surely something was about to go wrong. Somehow, everything went smoothly - and, after a blink of an eye, I'm already two weeks in to the five-week-long radiation schedule!

 

Logistics

Brad and I are traveling to Houston every Sunday night and traveling home to Dallas every Friday afternoon. We are staying in a place called the Hope House- a ministry of Houston First Baptist. We are staying there free of charge for the entire duration of my radiation treatment. The condo has been an enormous financial blessing not having double rent. It has also been ridiculously convenient, as it only takes three minutes (!) to get to MD Anderson. 

In an effort to retain some sense of normalcy for Noah and David, our parents are caring for them in our house in Dallas. Being away from them each week as been tough. I've starting talking to random toddlers in the park and staring at babies (...wait, you are saying that isn't socially acceptable??). We are so thankful for my parents watching the kids, my in-laws relieving them this next week, and all the dozens of friends that have come and supported my mom in the evenings. Everyone has come together to make radiation for me in Houston a reality. (More to come on why we chose MDA for radiation...)

Treatment

The purpose of radiation is to treat my remaining lower neck lymph nodes, mop up any remaining cancerous cells in my chest, and treat my skin (which also had cancer in it). Current medical knowledge uses photons and electrons to do this...aaaaand that’s about where my radiation knowledge ends. I’m spending next weekend with my radiation-oncologist friend in Florida so maybe I’ll be able to explain more after that!

My appointments are roughly 7am and 1pm each day (they have to be six hours apart) plus a handful of doctor appointments each week (radiation-oncologist, surgeon, physical therapy, integrative medicine, etc.). In between appointments, I've been focusing on resting, walking, yoga-ing, cooking, and just generally taking more care of myself than I normally would as resident mama. It has been fun reconnecting with Brad during the week- every night is date night! 

I've experienced some (minor) side effects from radiation. My skin has started turning pink already - apparently it is pretty early in the treatment for that to be happening. I see it as a really expensive tanning bed! A more serious side effect is that my wound has opened up some and still has some unhealed parts. Radiation slows the healing process so my wound may get worse before it gets better. :-/ The last thing that's been slightly annoying is that radiation apparently irritates the chest wall muscles causing me extreme pain when I breath, laugh, sneeze, etc. If I take Ibuprofen that seems to help reduce some of the inflammation and pain.

Each day passes by so quickly while in Houston doing so many fun things and in Dallas reconnecting with the kids each weekend. I'll do my best to post a few more updates but if I don't, know that life is good and I'm savoring every moment of it. I hope you are doing the same! <3