Two kinds of cancer?
Lorelei had a CT scan last Friday and one yesterday. They showed significant change in just six days so we needed to figure out why. Only a PET scan would show us that. Lorelei had a PET scan (her fourth) today.
Then we met with Dr. Keole to discuss the results. We were hoping the PET would show that the change between CT's was just because of some fluid. And indeed there was some fluid (pericardial effusion) showing up in the PET. But the tumor in Lorelei's chest grew over 12mm in just six days. The PET scan confirmed that we are dealing with both. There is fluid. And there is growth in the tumor. And the tumor does not look like Hodgkin's at all.
Dr. Keole told us he's not a man of faith but that he thinks he just witnessed a miracle. He can't explain the "fluke" that caused Lorelei to have to have two scans which allowed us to see the rapid tumor growth. He looked Lorelei in the eyes and said "If we had followed the original treatment plan you would have died." He admitted he doesn't know what we are dealing with.
So then we left Dr. Keole's to go over to Dr. Geister's office.
Dr. Geister explained the new plan. He spent much of the day calling other doctors to get their opinions.
At this point the doctors suspect Lorelei has had two kinds of cancer all along. This would explain the "failure" to fully respond to chemo. The chemo she received was for treating Hodgkin's lymphoma but would not have killed other types of lymphoma. So, she may have actually beat the Hodgkin's disease and treating it may have kept the other (non-Hodgkin's lymphoma) at bay.
We need to know more information about that tumor. What is it and why is it growing so rapidly? So, Monday morning Lorelei will report to Oklahoma Heart Hospital. She'll have an echocardiogram first and then a "left second intercostal exploration" to biopsy the tumor at it's core/base right above her heart. It's a major surgery and she'll likely be in the hospital for several days. Dr. Randolph will do the surgery and since this will be the fourth time he's operated on her she feels confident it will go well. They will implant a Hickman catheter (a tunneled catheter) and drain the fluid from around her heart during this surgery too.
Then, the following week on Monday Lorelei will report to Baptist hospital. She'll stay there all week to receive RICE chemotherapy (four days of sometimes 24 hour continuous infusion) followed by a Neulasta shot.
Then, after recovering a bit from that chemotherapy she will check in to OU Medical Center. Dr. Geister wants Dr. Jennifer Holter to oversee a stem cell transplant for Lorelei. It's not what we wanted but the doctor's believe it will save Lorelei's life. We are hopeful it will cure her. Even so, after it is complete we'll likely return to Dr. Keole to do radiation.
They say stem cell transplants are more effective before radiation than if given after radiation.
I've requested a leave of absence from work which means our income will be cut in half during this time and that's scary. We trust that God will provide. And even if we have to sell the house and go live in a double-wide in order to save Lorelei's life we will. (Don't worry--that's not likely.)
We've cried a lot. We still need a little time to process. Will update more later.
Posted on Fri, July 27, 2012
by Andrea Decker