Surgery is fast approaching. While I have been preparing for that, I have also been preparing for what my family will need while I am recovering. As a mom, I know that I do a lot. My husband is the sole provider for our family, but not the sole worker. Sometimes, we as moms don’t realize how much we do until you are required to tell another everything they will need to know to take care of your family. Here are a few of the things I did this week:

Made a daily schedule including what time to take the kids to school, the exact time to leave the house to pick them up — too early and you are waiting in the dreaded pickup line, but too late and your kids are left wondering if they have been forgotten, what kid has soccer on which day, what time the carpool picks them up, what days they have PE so they have the right shoes on and when to tuck them sweetly in bed. Cleaned the stacks of stuff that had been piling themselves higher and higher in the office, the kitchen, my bedroom, even in the laundry room — Ethan said I was nesting. Stocked up on items my family may run out of during the next few weeks like shampoo, soap and favorite snacks. Baked 6 loaves of banana bread, rolled 20 breakfast tacos, and cut up one pan of granola bars.

When the family was taken care of, I still had planning to do for myself. Items and clothing that I would need for the week of surgery, none of which anybody would actually choose to buy for themself. Dry shampoo since I won’t be able to wash my hair.  A pillow to keep my arm from touching any sensitive area, which will basically be from my chest all the way around to my back. Chapstick and throat lozenges after being sedated for a few hours. Music and a speaker for my 3 days in the hospital. A robe since I can’t imagine that I will be dressing for a week. A few button-down shirts when I do have to be dressed since I won’t be able to lift my arms above my head.  And my smile… I’ve been searching for my smile to bless those around me and hide the turmoil that is really going on inside Ethan and myself. My smile that is going to show my hope and my faith even when my confidence in the future has left.

Fast approaching is the day when I will be changed forever. When a part of me will be gone…forever. My family will be cared for and my to do list done, but there is not much I can do to prepare myself for that day. I long for the day when we all get glorified new bodies. When our pain and sickness, our anger, and our disease are led to rest. When our weary, broken souls finally meet their maker and that smile can be genuine again.

Our MDA trip on Monday finally brought closure to the journey. We have been living in the middle for a while… maybe here, maybe there. MDA is supposed to be great, but my home, my family is here. Experience vs. inconvenience.

After enjoying some great fellowship with our Life Group Sunday night, we again found ourselves on the dark, empty road to Houston. A drive that I used to not mind, but lately I have come to curse. Blessed to have Ethan’s mom live so close to the med center, we woke early Monday to start another day of doctors and decisions. First up, the surgeon. She was ready to do surgery. She was confident that she could get the cancer. She even put a glimmer of hope for radiation. Nice lady, but I walked out of there not convinced that I would carry out the surgery that I had just put on the calendar. My surgeon is as good as her. I can just take the info back to her.

On our way to grab lunch, I called my surgeon. I gave her some details, she agreed and sounded like she could be convinced to go ahead with surgery. But then she threw a major kink in, “You know I am pregnant, right? My last surgery will be Oct 31.” It would be a giant feat to get scheduled and everyone on the same page in the next 2 weeks. Que the slammed door.

Next up, oncologist. He is a brilliant man from Mexico who has 25 years of MDA cancer experience. He speaks with a heavy accent and is the definition of a close-talker, but he is great. He reviewed the scans from last week communicating that we are looking at a mass about 8cm x 5cm x 3cm. Aggressive, rare, but still contained. No evidence of lymph nodes effected. He agreed, surgery. Again, thanks for the 2nd opinion, but I was still planning on surgery at home. And at this point, I even called my surgeon back to see if I could get on her schedule.

Before we head home, Ethan and I decide that seeing the radiation oncologist would be beneficial. So, we go to the desk, we request and appointment and just like that we have one. This man was my modern day Gabriel. He stepped in the room, big yet gentle, and spoke the words that would change my course. The community (outside of MDA) standard is to not radiate an area more than once. But experience and precision of MDA has shown them that it can be done, and in some cases changes your statistics for the better. The surgeon will do her best to get all the active, known cancer out. But there is always the chance of the random cells that are slightly distant from the margins that may come back clear. And that is where radiation picks up the baton and finishes the race. Radiation is like an extension of surgery, able to widen the treatment field. When Austin radiation oncologist took the option of radiation off the table, it was a big disappointment. Like a major player was taken from my game plan. So to be associated with a team that would bring it back, was a giant deciding factor.

Let’s also go here for a moment. Go back to 2010. We are cancer-naive. We are being fed the information we needed to make decisions, but maybe didn’t get the real, big picture back then. There are things from the 2010 pathology that make my doctors in Austin say, “I am not surprised it came back.” And, “Why did they not take all of your lymph nodes?” And, “Why did they not radiate the upper level 3 nodes?” It was not communicated that the cancer had vascular “tentacles” that could easily carry the cancer, causing a recurrence. So, we could go as far to say, if we had more information in 2010, would the picture look different today? And I certainly don’t want to be asking myself that question 3 years from now. I have the opportunity to use some of the best in cancer care. Only a fool would choose convenience over experience. Especially when this experience can extend my life.

Surgery is November 5th at MDA in Houston. There are still appointments to be done, pre-op testing, and after pathology is in from the surgery the next game plan will be put in place.

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.

Despite how much I feel that I am constantly talking about cancer, it has been brought to my attention that many of you are still kinda clueless on my whole situation. There is a lot more to this than “my cancer is back.” I apologize for this coming late, but I thought I would try to educate a few of you on cancer and treatment. I am not claiming all of this to be accurate, but as the information makes it to me, this is how I understand it.

Cancer is an uncontrolled division of abnormal cells; cells do not die when they should and new cells form when the body does not need them. They can quickly become a cluster of cells or a tumor. Let’s take my original cancer. I had a tumor of cancer cells. Those cells were tested and confirmed ER+ PR+ and HER2-. It also had a lymphovascular quality — think “arms” reaching into surrounding areas. My current doc said that was a red flag that it was likely to come back. We made the choice to cut out the cancer, chemo to kill all possible abnormal cells, and radiation to kill any leftover cells in the area. Most likely, that well laid plan didn’t work. We missed something, and it only had to be 1 cell. The cancer today is different. It is ER- PR- HER2-. There three possibilities. 1. The original cancer was still there and changed. It was not able to feed on the estrogen/progestrone since it was being blocked by one of my long-term medications, so it mutated and found something else to fuel it. 2. There were 2 instances of cancer and ER/PR+ cancer was eradicated, but the triple negative cancer still sat “active”. We don’t know why after 4 years it would have presented itself, but it came and grew quickly. 3. Original cancer was taken care of and this is an entirely new cancer. My oncologist leans to scenario 1 or 2, which I am fine with. It makes my survival rate much higher than thinking that my body has produced 2 different cancers in 4 years.

Either way, the cancer is here and now we will treat it. Oncologist is fairly confident that we will be able to beat this instance, but there is no sign of what my body can do in future. The cancer has grown quick and is aggressive. Docs decided to start with chemo and see how it reacts. If the cancer shrinks, they will know that it does respond to the chemo. Alternatively, if it doesn’t shrink or grows, that is good to know as well. We will follow with a bilateral mastectomy and most likely radiation (again).

Here is what the chemo looks like: I am on a 21 day cycle. Monday-Week 1, I have Gemzar/Carbo combination. Carbo is the ugly drug, it is actually made of platinum. I get a dose of steroids and benadryl to prevent a reaction to the metal. The benadryl knocked me out for the day, and the steroids made me jittery and hungry all week. The carbo did the rest of the work. I was exhausted for about 4 days, not sick, but uncomfortable and cranky. Things didn’t taste good, water was unsatisfying, and I took a 1-2 naps every day. By Friday evening, I was back to myself. Monday-Week 2, I only had Gemzar. I was a little tired Monday, but the rest of the week was normal. I did all my normal activities, soccer practices, ran, workout class, homework. I am so thanful that I have felt good. Now the first round did knock my counts down really low, but we decided to go ahead and do the 2 round. To keep from getting really sick, I had to have a daily Neupogin injection to build my white blood counts up. Week 3 starts tomorrow and I don’t have any treatment. My week off. Then I start that cycle all again up to 5 more times, taking me probably to July/August.

I think the hardest part of cancer is the unknown, the questions, the testing. I feel that we have past all of that and now we are in full swing. We worry, we pray, we ask questions, but we march on. God has certainly led us into unknown waters where feet my fail, but our faith with stand. (Love that song by Hillsong) I am not just His, but He is MINE. Thank you for walking this with us. Thank you for the words, cards, the generous donations, the prayers. We are blessed.

I know that I have my children for such a short amount of time. I know that the years go so fast and I will look back and miss the moments of tantrums, slamming doors, spilled milk, laundry, crying, whining. (Really, will anyone miss the whining?) Despite what we know, we choose work over fun. Cleaning, cooking, laundry, dusting, organizing. And if we are honest, we know that despite our best effort at those things today, we will still have to do them again tomorrow. Well, my current lot in life has given me a new perspective and today I chose fun! Messy, creative, “oh, no you didn’t”, FUN!

We took a drop cloth to the front yard and a few extra canvases and painted! All the paint you want, yes! drop it there, smear that, add some more, splatter it everywhere – paint! My only rule was that they couldn’t “draw” with the paintbrush. They had to create with creativity. And, I had a blast. When you let the concerns of life go, you can just allow yourself to be free. And, surprisingly, kids are very creative if you give them the space. I think mine were a little surprised with the “fun” that this mom allowed today. Even though I now have a garage of paint supplies to clean up in addition to my sink of dishes, laundry to fold, and floors to vacuum, I am glad that today I chose fun!

Looking into the coming week with another round of chemo on Monday, I know that each day cannot look like this. If this week mimics last, I will be in bed more times than I want, and I will be letting the work and the fun slide more than I want. Honestly, knowing what is to come, I am not looking forward to tomorrow at all. Many have asked how I feel, and I am thankful that I have not been “sick”. But Monday – Friday my body was worn, tired, jittery, just not myself. Things feel different, food tastes different and I feel like I just don’t belong where I am. But by Friday evening, I was back to myself. I was able to enjoy a good weekend of soccer, church and friends and able to fill my cup back up just enough before it gets dumped out again tomorrow. Cancer sucks.