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.

We have been waiting for several weeks on biopsy results. The first core biopsy did not have enough live cells to determine the specifics of the cancer, so the needle biopsy was done last week. My original cancer was ER+, PR+ and HER2 -. The docs were at least hopeful that this time it would be HER2+ because that gave them another drug to use to target that protein and basically cut off the cancer’s fuel source. The news today is that I am what they call triple negative (Triple Negative Breast Cancer). All I know right now is that the drug they could have given me to fight the HER2+ cancer, won’t do me any good now.

I did receive some very good news however. The BART genetic test that I took, came back with no mutations. So I am BRCA 1, BRCA 2, and BART clear. My girls will have an automatic high risk for breast cancer, but at least it is not in the DNA.

It’s the day after chemo, and I am doing okay. I notice a little sleepiness, but can’t do much about that today. We will wait and see if the days ahead hit harder.

I come to this office several times a year. A quick checkup, a smile to the people sitting in the treatment room at the end of the hall, and I was done. I think the last time I was here I probably even said, “I am so glad that I am not back there.”

Well today, I sit in that treatment room, and I have my best friend sitting with me. I definitely bring the average age in the room down by 40 years, but maybe I can bring some youthful humor to this place. So far, I think they just all think I am in the wrong place. We have the saline started that they run before the meds. I’ve had the discussion of side effects from the nurse and accessed my port. I’m trying to get comfortable in this chair and settle in for a few hours.

I have had such great encouragement and love sent from so many of you. Thank you for being in my corner as we start this fight.

“As the mountains surround Jerusalem, the Lord surrounds his people.” Psalm 125:2