This will be a long and heavy post I imagine. This is going to be one of those posts that is actually more for me to use as a processing mechanism than anything else. So here goes...
Brad and I drove to MDA Sunday evening after a wonderful weekend with friends visiting and a morning of worship that included Brad and I sharing our testimony with our Sunday School class. It was one of the best weekends I've had in a while; it included me laughing so hard that my abs hurt (or the area that used to be my abs). I woke up not feeling so good Sunday morning (emotionally and physically) but God was so incredibly faithful to give us the strength to still speak in class. At the end of the class, everyone prayed over us. It was very moving.
One of the partners at the company I used to work for offered for us to stay in their guest house while in Houston. It was magnificent. After all the hotels, nice homes, and places around the world we have travelled, I think I can say this was the nicest, most comfortable place we have ever slept. Not having kids to take care of overnight was great for getting a really good night's sleep both evenings in Houston.
Despite my tumor(s) growing over the past month or so, I had the most wonderful peace driving into MDA on Monday morning. Thank you to everyone that was praying for us. I felt so calm and actually very happy for most of the time spent at MDA.
Monday was surprisingly really fun. I got to see a college friend that works at MDA, a fellow breast cancer friend from Dallas that had appointments the same day as me, and a researcher post-doc friend that always gets me good data. I actually had more meetings on my social calendar than medical appointments, so it was easy to believe that MDA is a totally normal place for hip 20- and 30- somethings to hang out. The only not-so-fun part was during the ultrasound when I watched the technician find many dark spots and take measurements of a whole lot of them. For my primary tumor she actually had to zoom out to see it. :-(
Monday evening was such a blessing to us- our hostess had made homemade lasagna (made with sausage from an elk her husband had killed!), set the table, and given us wine from her cellar. Her and her husband went out to a concert for evening and gave us a rare night alone to just be together- what a gift! Brad and I were able to have a wonderful date together and a very genuine, heartfelt conversation about hope, faith, love, trusting our God through this, and considering all possible outcomes. It felt great to have a long, safe, & honest conversation that acknowledged the chance that I might not make it through this alive. It helped prepare us for what was coming the next day.
The next morning our lovely hostess got up early and made us breakfast before heading out to a meeting with the CIO of a $10B company. Can I please be her when I grow up??
My appointments weren't until the afternoon so that allowed me some time to pray and prepare my heart for the day's appointments. I again felt a wonderful peace as I prayed that morning. It was a gorgeous day in Houston, so that definitely didn't hurt!
The first person that met with us was the surgeon's Physician's Assistant. She ended up having to be the bearer of very bad news. You probably already have caught that I was diagnosed with essentially the most aggressive form of breast cancer - IBC, triple negative, with 96% of my cancerous cells replicating. So within that group you can have four categories of responses to chemo - 1) All the cancer is gone (that was the pCR we've all been praying for), 2) the cancer decreased somewhat but not fully gone, 3) the cancer stayed the same, or 4) the cancer actually progressed over the course of chemo.
Unfortunately, mine was the fourth option- I have had "significant disease progression" after the six months of chemo. This is the worst thing I could have heard from the doctors yesterday. They believe it may have spread to my other organs and so I have a PET scan tomorrow (Thursday) to investigate that. My breast is full of "satellite tumors", the primary tumor has close to doubled in size, and I have more lymph nodes involved both in my armpit ("axillary") and around my collarbone ("infraclavicular" and "supraclavicular"). The single good piece of news was that there were no "internal mammory" nodes found (under my breastbone).
So now they have started to treat me the same as a metastatic patient: taking surgery off the table for now and putting me on a different combination of chemo drugs with the hope of controlling the growth of the disease. There is a chance that the new chemo drugs could control my cancer better than the ones I've been on and I could move on to surgery later. The problem is that in order to do surgery I would have to be able to be off chemo for 7-8 weeks. If the cancer is not well controlled (i.e., gone or almost gone) before taking an 8-week break from chemo, then there is a significant chance of it cropping up somewhere else.
Where do we go from here?
The next steps this week are PET scan Thursday (with results on Friday) and two new (for me) types of chemo starting ~Friday (hopefully). We will try two rounds of chemo over six weeks and see if they work. We will know pretty quickly if it is working since my cancer grows at the speed of light. At the end of six weeks if it looks like its working then I will keep going on it; if not, we switch to something else. (Each time we switch, the probability of it working goes down.)
Brad and I were devastated by this news. My prognosis now is pretty rotten. All I could think about when they were telling me the news was the boys and Brad. I'm afraid that there is now a very good chance that David and Noah will have no memory of me and will grow up without a mother. This thought is extremely hard for me to deal with. I hate thinking about leaving Brad to handle raising two small boys, while working full-time, on his own. I hate thinking about leaving Brad without a life partner to depend on and enjoy life with. I feel badly for my parents potentially losing a child. I feel badly for my close friends - especially some friends who have their own crises they're going through right now. I wish I was supporting them through their struggles instead of piling on my own. I am so sorry to the people that have been keeping up with the blog that I can't report better news to you, that I can't strengthen your faith through the story of a miraculous healing. I am so, so sorry.
On the way out of the doctor's office I was crying and saying to Brad, "I guess God has chosen not to work a miracle in my life. He hasn't heard our prayers." We got on the elevator to go back to our car and were hugging while I was still crying a little. One other couple was riding the elevator with us. As we got off the elevator the other couple asked if they could pray with us. We accepted - we will take all the prayer we can get. We had no idea who they were, and actually didn't even catch their names. Then, as the gentleman was praying, he prayed a word-for-word response to the statement I had made not five minutes earlier. He prayed, "Lord, give this woman the courage and faith to know You are big enough to heal her and that You are a God of miracles, and You can work a miracle in her body. Thank you that you hear our prayers." Then, after the prayer, he looked right at me and said, "hold on to your Faith. God is still in control." Brad says that if we have ever in our lives been visited by literal, physical angels, it was that moment. To have complete strangers answer back a faith-affirming response not 5 minutes after I uttered a statement of hopelessness and despair... even if they weren't angels, then it is an amazing testament to fellow members of the corporate Body of Christ being sensitive to the prompting of the Holy Spirit and encouraging us with words straight from the heart of God.
So now I struggle between hoping/praying for a miracle - to still be cured despite immense odds to the contrary - and the scientist/realist in me that knows what my future looks like statistically. I am still hopeful that I am not metastatic (yet) and that the PET scan tomorrow will come back negative. I want the new chemotherapy to work amazingly well, allow me to have no evidence of disease, and go on to surgery. I want to be cured and live a long and wonderful life with my family. I want to host a massive party for David at his 5th birthday. Lord, please allow me these experiences.
My "plan" for now is to take it one day at a time. Each day that I wake up and still have breath in my lungs, I'll ask God to use me for His will and for His glory in that day. Instead of having some grand plan of the perfect treatment and associated response (i.e., that flow chart I built), I will try my best to "go with the flow". Anyone that knows me, knows this will be incredibly difficult for me. I will keep asking "what's next?" and praying to Jesus that there is still a "next" to try. God is still good, and He is still in control, even in desperate moments when I don't feel him close by.
So today I woke up and had a pulse. I feel healthy and have no symptoms. Today I will be thankful for those things, and I will be grateful for every single day that God allows me to live.