I have this daily devotion book. It sits on my nightstand collecting dust a lot of days. The days that I do open it up, that day’s message are usually profound and exactly what God needed me to read THAT day. I love how the Spirit works in me. Yesterday’s message hit me hard. I wanted to sit and write what I gleaned from it to encourage anyone reading the blog, but it just didn’t happen. Today, it was on my schedule to do. But 2 hours had already past by this morning, I was still going full speed toward unimportant tasks. As I read today’s message in my book, it pricked my heart as well. It was based off of Luke 10:33 when the Samaritan stopped to help a man in need, a man who was his enemy, a Jew. My book states that God is at work in the lives of my friends, my family, my neighbors. He may ask me to interrupt my day long enough to join Him as He ministers to those around me just like the Samaritan helped the hurt man. In other words… Julie, sit down and write.

There is a lot going on. For over 7 months, we have walked this journey of cancer. We have learned new information every step of the way, most of it not any better than what we learned the step before:

It’s back. It’s changed. It’s aggressive. It’s spread through the skin. It didn’t respond. It is hard to remove. It’s probably going to come back.

Don’t think for a second that before those statements came true that I was not covered in prayer. That all of us did not bring our requests, our pleadings to the Lord Almighty. But please don’t confuse that with He did not hear or He did not answer. Isaiah 58:9 says, “You will call, and the Lord will answer; you will cry for help and He will say; Here I am.” Sometimes, the answer is just a simple, quiet “Here I am.” Is that enough for us? It has taken many “no’s” for Ethan and I to change our thinking, change our prayers. Prayer is not meant to be us telling God what we want or how we think it should be. As a friend described it, it is not a remote control that we can point at God. Prayer is communication. Prayer is putting myself in His control. Prayer is trusting that his answer is enough. Yes, we submit our requests to the Lord but then it is not our job to say if He answered correctly. As I begin to trust his answers, I begin to ask less for healing. I am asking more for Him to use me. Through that comes his grace. And His grace is a beautiful thing when it is all you have to hold on to.

So, yesterday’s message was from 1 Kings 19 when Elijah, a prophet of God, is discouraged. The Israelites had turned away from God, killed the prophets and Elijah was left alone and fleeing for his life and prayed that he may die. Then the word of the Lord spoke to Elijah:

“Go out and stand on the mountain in the presence of the Lord, for the Lord is about to pass by” (paraphrased) …a great and powerful wind tore through the mountain and shattered rocks, then an earthquake, then a fire. But God was not in any of those things… “After the fire, came a gentle whisper.”

Enlarge my photo above. It is from Pike’s Peak in Colorado this summer. I wish that I could stand on that mountain right now, stretch out my arms and just feel God’s presence. The the wind, the clouds, the storms, the fire… that is not always how God responds. We want him to send the earthquake of healing. The miraculous, supernatural, instant, unmistakeable healing. We want the powerful wind to blow through this journey and in the end be healed and whole. Be honest, we want it big. And I have seen big. I have asked for big and asked God to SHOW UP, and He does. But also be prepared for the gentle whisper. The grace. The everlasting love that can never be taken away. Be willing to hear his answer be “Here I am” and let that be enough.

We finally got the appointment that we were waiting on with a doctor at MD Anderson. Its amazing how difficult it really is to see these guys. Not just MD Anderson. We had to jump through hoops to try to see the Baylor doctor as well. We forwarded records and images and waited 2-3 days for her to review my history before she would confirm an appointment. Then we hear that she does not accept Humana, something you would have thought they would check first. I am still interested in seeing her, but we will go to MD Anderson next Tuesday and see how things go there first. I don’t really know what we are hoping to hear. I feel like I have my heart exposed and anything could come back. My biggest prayer is that the treatment plan will be consistent with what my doctor here wants to do and I will not be left with a decision to be made on our end.

Chemo was on Monday and Wednesday/Thursday hit me pretty good. I have done this routine 16 times and I am still surprised every time. Most of my pain and fatigue comes from the Neulasta shot that I get on Tuesday. It leaves me with a headache, achy body and just tired. So yesterday after I took the girls to school, I might have crawled back in bed. Today, I woke up feeling like my old self. I have got a little work to do today, 3 soccer games tomorrow and life goes on… We don’t have time for cancer around here.

I will update after the appointment on Tuesday. Thank you friends, near and far, who are walking beside us.

A lot of cancer centers have a bell that you ring when you complete your treatment. There is a large, bronze bell that sits on the desk next to my nurse. It has a big handle that is just begging someone to pick it up and give it a ring. A I-have-beat-this-thing ring! A week from today, I should be ringing that bell. Signifying another step complete. But, I will not get my chance…yet.

Last week the plan was to have surgery and then get back to more chemo. We had decided to just do the Abraxane, and not mess with the Adriamycin. It has risks on my heart that I am not willing to take right now and I can look back 4 years and say that I am not sure it really did its job on the cancer the first time. It is supposed to be the strongest, most effective on breast cancer, but mine is still here. We will continue with my doctors in Austin, however, I think my case is being presented to a team of doctors at MD Anderson through a connection that my mom made.

Then while enjoying lunch with my man, my surgeon called today. She has been thinking….
She is very concerned that she will not be able to get all the cancer out at surgery. The original MRI in March showed the depth of the cancer was alarming. It spans from my skin through to my muscle in the chest wall. The reason we chose chemo first was to shrink it to make surgery more successful. Since recent scans revealed that the cancer did not respond, she is still concerned about the depth that the cancer extends. In a typical patient, if surgery does not remove all the cancer, plan B is to kill the cells with radiation. I may not have a plan B. I have already received a high dose of radiation and they are not sure how effective they can be with another dose. I meet with the Radiation Oncologist on Wednesday to discuss this. The surgeon and my oncologist are discussing if we move forward with the new chemo drug to see if we can shrink the cancer before surgery. I would be for this because it would at least give us a way to measure the progress. But the oncologist is worried the longer the cancer sits, the more opportunity it has to spread. My guess is that this decision will be coming toward the end of the week.

There are so many of you who are following and praying with us. We thank you so much. I love Fight4Julie Mondays and I love seeing people I don’t even know following the story. We were kicked down a little lower today, but we are still fighting.

“Cast all your anxiety on him because he cares for you.” 1 Peter 5:7

Let’s start with the good news and move on to the more complicated stuff. Julie had a CT scan last week to look for any evidence of metastasis or spreading of the cancer. The scan came back as all clear for her torso with one area on the lungs the doctor is going to keep an eye on. He didn’t feel it warranted any concern and appeared to be stable for the last few scans. So let’s call that a praise and good news; the cancer still appears to be confined to the original location. She still has one more round of chemo (2 treatments) and is scheduled for surgery in late October to remove the tumor and cancerous skin.

Moving on to the not as good news. After surgery her doctor is recommending we talk about couple of different options. Julie will be going back for more chemotherapy after the surgery, and the strategy is identical to her first occurrence where they performed surgery, chemo, and then radiation. She will be doing all of those things again, but the options for chemo and radiation are more complicated this time. Somebody at this point is asking why is she doing more chemo? Julie’s MRI from last week showed that the tumor has not responded to the two chemo drugs she’s currently taking. The oncologist said that they would have like to have seen the cancer go away completely, which was completely possible, but hers as only shrunk 1/3. From what we have read, cancer that does not respond to chemo has a higher risk of returning.

Her doctor has given her the option of two different chemo drugs. One she’s had before, one is new, or a combination of the two. The problem for Julie is the combination drugs she recieved during her first occurence was a regimen of ACT (read more here http://chemocare.com/chemotherapy/faq/act-chemotherapy.asp). Unfortunately the one drug from the original combo, Adriamycin, is really toxic to your heart. While she could receive the drug it puts her at risk for heart failure. Each dosage would have to be monitored very carefully, checking her heart all the way. Her doctor is recommending another drug that doesn’t have the same risk, is potentially easier on her, but might not be as effective, Abraxane. The regimen for that drug is every week for 12 weeks. After the chemo regimen is done she will still have the potential for radiation therapy. The plan for this is yet to be determined and will be influenced by what the breast surgeon finds. This also has complications because she has received radiation previously and it can affect her heart and lungs.

Julie has triple negative, inflammatory breast cancer, which means there isn’t any follow up hormone therapy. That means there is nothing the doctors can do to attempt to control any recurrence of cancer, and that’s where it gets really hard. The doctors best guess is that Julie has 40-50% likelihood of recurrence in the next two years and similar statistical survival rate at 5 years. Those aren’t good numbers and I don’t want to scare everybody, but the doctors, Julie and I are obviously extremely concerned about this outcome. She will be put on a rigorous schedule of follow up visits with doctors, CT scans and blood work. There’s not much that can be done. Her oncologist has offered that if she wants to go see the country’s leading triple-negative breast cancer specialist in Dallas he will send her. (Joyce O’Shaughnessy, MD, from Baylor-Charles A. Sammons Cancer Center in Dallas, Texas). We just received this information today and we have not made any decisions in that direction.

What Julie needs more than anything is your love, support and prayers. She has been and will continue to be somewhat private about this issue, and this week has not been full of uplifting news so sometimes she doesn’t feel like sharing. We feel that she has a very solid set of doctors, they are reviewing the decisions with a local panel of cancer experts, and she is receiving treatment above the national standard. All of this will clearly continue on into next year and probably even longer, and everybody needs to be ready for a long, protracted fight. I’m happy to answer questions you might have about her treatment and how she is doing, and I hope she follows this up with her own words.

-Ethan

This post is long, LONG, overdue. To my friends who have checked back often, only to be disappointed, I am sorry. I have bumped into many who have asked how things are going and they mention that they haven’t heard anything. You see, from my perspective there is not a lot to share, not a lot has changed. But that is because I am caught up on all the doctor visits and chemo treatments. It’s true, not a lot has changed, but I realize that many of you just want to read that.

I am scheduled for 8 rounds of chemo. That is the max that my doc wanted to do assuming that I “handled” the treatments and was able to tolerate it. Lucky for me, I guess, I tolerate chemo well. So I will have a total of 8 rounds, which will take me up to October. Last week, I finished round #4 — half way! I wish that it felt like I was on the home stretch, but it doesn’t . There is so much un-fun stuff left with this fight, that honestly the chemo seems to be the easy part. But then as I begin to type, I am drawn back to previous posts. I always enjoy reading them. And I see how much I have been through. The office visits, the unknowns, the pain, the worry… Now I am going through the motions, kinda the quiet before the storm. I say “storm”, because the idea of surgery seems torturous in my mind. Barbaric. And I try not to look too much in the future because my mind with get stuck on that.

I have switched to a 28 day cycle. That means that Day 1, I have the Carbo/Gemzar and Day 14, I have just the Gemzar. Each of those days is followed by a Neulasta shot that boosts my bone marrow to make more white blood cells to recover quicker. The shot is the main source of my “down days” which causes headaches, tiredness and fogginess. By Friday, I am usually back to normal, so it is short lived. My treatments have been going well. I joke with the doc a little, enjoy the nurse who treats me, and I usually get to bring along a friend each time. The word from my oncologist and surgeon is that the cancer is shrinking. They will not do a MRI until before surgery, but they are confident that the cancer is responding to the chemo.

I hope to get back on here soon with more of my heart, because there is a lot on it. Until then please continue to pray for us:
1. That the cancer continues to respond and shrink
2. That Ethan and I keep our eyes on God when doubt and worry of the future is upon us
3. That my mind and body are preparing for surgery
4. That God can use me and my experiences to encourage and bless others

A few selfies of my chemo buddies.

It was expected. The entire purpose of chemo is to attack all your fast-growing cells and as that happens, it attacks all the good cells in my body too. Round 1 is the Carbo/Gemzar combination and it will knock down my white blood cell count (WBC), specifically the neutrafils (which is a major type of white blood cells used for fighting infection). The normal neutrafil count range is 2,500 to 6,000. My round 2 is only Gemzar which specializes in knocking down my platelets — hence the ER visit last week.

So today, I was going in for Cycle #2, round 1. Are you keeping up? They access my port and draw blood to check my counts each time. My platelets had risen from 54 at the ER to 400 today, normal range still being 1400-3500. But they were fine, I am expected to be low. However the WBC was too low to receive treatment. My neutrafil count was 600 with the minimum needed to receive treatment at 1200. 600 is the lowest that it has been in the last 3 weeks. The doc didn’t say why or express that he was concerned, it just meant that I couldn’t do the treatment. I will, again, go in daily for 4 days to have a Neupogen injection to boost those neutrafils. No side effects, not painful, just annoying. I will go back next Monday, the 21st for the Carbo/Gemzr combo. They will reduce the dosage by 25% to try to keep my counts higher so we can continue to stay on track with treatment. While I am all about a plan, the concern is really that the longer I go without the chemo, the more chance the cancer has to grow back. Today, I enjoyed lunch with my chemo-partner and felt good enough to do all my normal daily tasks, but I would have rather knocked the heck out of some cancer today.