Thank you to everyone that prayed for us during our trip this week to MDA. We had a super productive, albeit exhausting, trip. We met with a slue of doctors and now we feel like we have a peace about what to do next.
6AM – Rise and shine at the Dean house. Allison got up even earlier than we did to get our hot breakfast together before we left. So kind!
7:30AM – Sonogram to see how my resident tumors are doing. The radiologist said that everything is moving in the right direction (shrinking). By our calculations based on the measurements they gave for before and after treatment so far, it looks like everything came down to a quarter of what it was before (by volume). While this is good, and much better than everything growing over the last eight weeks, it isn’t as good as it might need to be to have a complete response (all cancer gone before surgery).
|Brad getting some much needed shut eye in the waiting room.|
8:30AM – Blood work. Man those lab techs are good down in Houston! They take blood like its nobody’s business. My best two sticks have been my two times down to MDA. You barely even notice they took blood from you- they are good!
9AM – Everything went way faster this visit to MDA so we got a break before our next appointment for some much needed coffee. A couple ladies I was VERY excited to meet with happened to get out of a meeting early and came and found me in the cafe.
The first one was Terry Arnold. Brad calls her the “Den Mother of IBC”. She had my same diagnosis 7 years ago (triple negative, IBC, took 4 months to diagnose). She was treated at MDA, was "cured", and has been crusading for IBC ever since. In 2011, Susan G. Komen and American Cancer Society didn’t even list IBC on their websites. It took two years of her writing and calling for them to finally post some basic information. I told her she saved my life because that is where I got the information to diagnose myself and get treatment in record IBC-time. Then, seeing how little funding goes to IBC research, she set up her own non-profit where all the money goes to research. They have funded 3 projects in the short time her charity has been around. She also has connected women from all over the world who have the disease. She created this google map and a Facebook group with over 500 members. Even though the disease is rare, we are not alone!
The second lady was Angela, a post-doc with MDA focusing on (drumroll…) IBC and triple negative breast cancer! I want more Angelas in the world! She is a wealth of knowledge. I want to download her brain into mine. She is not only a fantastic resource - she is also very giving of her time in being willing to answer questions for everyone on the Facebook group.
I could have talked with these ladies for another six hours on Tuesday. I hope I get to spend more time with them on future visits.
10:30AM – Met with the oncologist. Dr. Valero is very formal compared to my oncologist at UT Southwestern. We spent a lot of time talking but in the end he had the same conclusion my oncologist in Dallas had come to weeks ago. He said if my cancer had been completely melted away with the AC (the first cocktail of chemo), we would only need to do the Taxol. But since I still have lots o’ cancer, we should add in the Carboplatin. So that is what we are doing – twelve weekly rounds of Taxol with Carboplatin every third week (so four total doses of it).
I asked him if it was still possible for me to achieve a complete response and he was very indirect by saying "that is why we are adding the Carboplatin in, to try and achieve a complete response". I think I heard him thinking “No” but saying it in a way that it could sound like a “maybe”. Yikes.
12:30PM – We went directly to the surgeon appointment. The surgeon had a great bedside manner. We are leaning towards doing surgery down in Houston. If we can work out the logistics I think we are going to try for it. With IBC you have to do a modified radical mastectomy, which is code for they take the whole breast, the lymph nodes in the armpit and as much skin as possible but leave the muscle behind. I personally want a double (both breasts) but there is elevated risk with a more drastic surgery, so we haven't made that call yet. Is it bad that part of the reason I want to have a double is so I can go running without wearing a million sports bras?
2:30PM – We spent a super long time with the surgeon, asking a million questions, so we were actually late for our radiation-oncologist appointment. This was the first time we met with anyone involved with the radiation portion of my treatment since it has always seemed so far away. It was good to get the scoop on what it will look like. I will have 44 treatments over 4 ½ weeks, twice a day, M-F. We are really hoping we can go to Houston for these. I thought that radiation was like chemo and you just decided on the doses and just had to execute on it. Apparently it is more like surgery where it matters who is doing it and how they specially develop a treatment plan. Obviously there are even more logistics to figure out if we decide to move to Houston for over a month, but if it improves the outcome even slightly, I think it is worth it.
4:30PM – Totally and completely wiped out, we got on the road and back to Dallas. We picked up the kids from one of the the nicest couples in our church who watched the boys while we were away. Seriously, cannot thank them enough for doing overnight feedings with David and keeping up with high-energy Noah.
As with every other step in this journey, God has made each decision almost trivial because the answer has been so clear. The type of chemo to do next was obvious, whether to do surgery and/or radiation in Houston or Dallas seems obvious assuming we can work out logistics.
I’m so thankful for the many, many people that are working so tirelessly for me to be cured: I feel incredibly supported and loved by our friends and family who make each step possible, and I know I am getting the best possible cancer care literally in the world.