Since Mom saw Dr. Goswami last week, she has continued to fight a fever. Dr. Houston started Mom on an antibiotic Monday. Thus far, it doesn't seem to be helping. The fever is low-grade, but is usually accompanied by a slight headache and increased heart rate. At this point, the cause is uncertain, so Mom is waiting it out.
This week, in three days, Mom gained 7 pounds. While the goal is for her to maintain or even gain weight, 7 pounds in three days is alarming. It has manifested itself in edema in her legs and lower back. Dr. Goswami thought it might be due to the large volume of water she's imbibing, so he suggested she cut back. Yesterday, she lost 1.25 pounds, but hasn't lost any weight today. Mom's struggle, at this point, is whether she should be up and moving (to help ward off clots) or sitting with her legs propped up. I think she's trying to do some combination of the two. The edema in her face and neck, which are thought to be a result of Cushing's from the steroids, has not improved. It will take some time for the steroids to leave her body, so we're hoping that in the next week, that swelling dissipates.
Mom's blood sugar is FINALLY stabilizing. She hasn't had to give herself insulin for over a week now. This is great news, as preparing meals without carbohydrates is difficult.
Also good news, is that Mom's really feeling better. She has been painting a mailbox for Bartley and I, and finished it yesterday. She has been walking regularly down the driveway and back, and even went to Oblong with Samantha and Sarah for some shopping on Saturday. Any doubts that she may not have great short-term memory due to her brain hemorrhage have ceased. She is feeling and acting more like herself each day.
While Mom was in the hospital last time (about two weeks ago), we withheld some information from the blog. It is difficult to explain how hard it is to have exciting, hopeful news, only to realize shortly thereafter that whatever it was isn't going to happen or work out. The day that Mom was discharged from St. John's, Dr. Goswami came in and asked what was going on with her cancer, as he usually does. We explained that MD Anderson is very happy with the tumor's progress. It is stable, and is actually dying inside. He asked about a doctor at Barnes-Jewish in St. Louis that Mom had mentioned previously. The doctor's name is Dr. William Chapman, and he is known for doing resections and transplants on cholangiocarcinoma patients. Mom told Dr. Goswami that she had thought about calling him that day, but that we hadn't done it yet. Dr. Goswami looked at her for a moment, and then he said "Do you mind if I call him?". She, of course, didn't mind, and Dr. Goswami said he would put a call in.
Mom hadn't heard anything since, and, for fear of pestering, hadn't asked Dr. Goswami about it. Yesterday, Dr. Goswami called Mom at home. Dr. Chapman had returned his call. He told Dr. Goswami that although MD Anderson is very good at determining chemo and radiation regimens, he didn't agree with their general assessment of cholangiocarcinoma. He asked if Mom would be willing to see him on November 9th. :) I know that Mom was overwhelmed by the news, and I can say with a fair amount of certainty that tears of joy, hope, and excitement were shed yesterday by all who got her text. See the links below for more information on Dr. Chapman's cholangiocarcinoma success stories.
Obviously, nothing is certain at this point. We usually try to wait until we know if seemingly good news will pan out in the long run before we let everyone else know. However, with the prospect of a resection or transplant comes immense hope. We couldn't keep it to ourselves. Mom needs every prayer you've got from now until Wednesday morning. Patients who are eligible for these surgeries have to fit a large set of criteria. If you have read anything about cholangiocarcinoma, you know that a resection provides a lengthened survival rate and is better than only chemo/radiation. However, a transplant is the only real means of long-term survival.
Please pray, maybe even harder than ever, that Mom will be a candidate. Pray that Dr. Chapman will see how badly she needs a transplant and wants to live. Pray that if she is eligible for a transplant, that she is one of the 16,000 on the transplant list who receives a liver. Pray that she will finally have hope of living without a tumor, that she will be able to see McKenna and Braeda and know that she will watch them grow up, and that she will grow old, wrinkly, and gray.
Thank you, thank you, thank you for all of your prayers. Without your prayers and God, we know that she would not be here now. And as always, we are ever grateful to Dr. Goswami, who oftentimes is the reason we have hope at all.
Written/Posted by Jenn