One step forward and a giant leap back
We had the wind knocked out of us today. We should have known we were about to receive bad news because our appointment with the doctor at MD Anderson was supposed to be at 9:40 but we weren't called back to a room till after noon.
Apparently the results of yesterday's PET Scan were perplexing enough to Dr. Nunez that he had to consult with several other physicians before meeting with us. Basically, he informed us that Lorelei's cancer looks to be more active and wider spread in the main tumor than when she originally came to MD Anderson. The glowing area is more intense and about three times the size it was six weeks ago. Yes, it got better between January and March (the first 6 weeks on Brentuximab) but then worse over the subsequent round.
She can't continue Brentuximab because it is no longer containing the cancer. All tumors are unique and Lorelei's seems to exhibit a pattern as being partially responsive to treatment, at least initially, but then becomes resistant quickly.
So, we left MD Anderson today without any treatment.
We asked the same question we've asked all along; Why the heck can't we just operate to cut the dang thing out? Isn't that what they did for Hodgkin's in the olden days? The doctor explained that surgery to "debulk" the tumor is very dangerous because the tumor appears to be connected/grafted to her major coronary veins/heart. It would require the precision of the best thoracic surgeon in the world and even then would likely leave behind cancer cells which might go into hyperdrive in response.
We are still processing this information and have been very weepy today. In fact, when we were at the airport (getting the heck out of Houston) I felt like my knees were going to give out on me. I think I was just being weighed down by my heavy heart.
Dr. Nunez thinks we need to give Proton radiation a shot right away. Like ASAP. Thank God there is a proton therapy facility in Oklahoma City! So, Lorelei has decided to bring her treatment back home while she undergoes radiation. We will need to put at least three months between her last radiation treatment and the start of the allogenic bone marrow stem cell transplant so that pushes the transplant out pretty far. Highly inconvenient that it may fall over the time that Dustin and Miles return from Afghanistan and even worse that it might overlap Dustin and Samantha's wedding in November. But this cancer has NEVER considered our convenience. Cancer is like that.
Have I mentioned lately that I hate cancer?
Lorelei is very sad. She was already sad about Russell Westbrook's injury and losing game 4 last night to the Rockets didn't help. Then getting news like this just put her over the edge. She asked the doctor this question: "So, basically, I'm dying. But the good news is I'm not dead yet?" He heard her sentiment and assured her that is NOT what he was saying. That's just how she feels. Her feelings are valid. We're letting her be sad. And mad. God will bring her to new emotions in His time. Her faith is still strong. I'm not so sure about mine.
Posted on Tue, April 30, 2013
by Andrea Decker