Monday we spent the day in Dallas at UTSWMC. We missed tornado weather in Burleson. Neighbors reported that it "rained" sheets of ice which explained why we had to clean up a mess of leaves (and the "worm-like" new budding danglers on the oak trees) around our deck and in the pool. Hail left pit marks on our fence, ferns and flowers but it could have been much worse.
It was interesting for us to meet with the social worker. Doug saw no need for it--until afterward… (What a man!!) It was a1 1/2 hour visit with Dale, a member of the transplant team. As it turns out Dale is the son of a Methodist minister whose father also became an administrator in the Methodist Conference. He understands some of Doug's type A ways from living with his father!
The meeting was as much a family history intake as anything. He also went over our finances and took a copy of Doug's health care power of attorney (and the Texas "Directive") which is required before ANYONE can talk to me or give me a sheet of paper with Doug's personal information on it. The forms were also required to have at the hospital admissions office prior to Doug’s tests. (Those of you who don't have someone named may want to consider ramping that up even if you are young and in the best of health. A parent can't talk on behalf of a child over 18 or a wife for her husband or a sister for her brother, etc., etc. etc.)
When it came to Doug's health history it also came up that Doug was adopted. Dale asked how that affected his childhood-teen years and attitude towards adoption now. Doug replied that his own experience was so positive that we adopted both of our children.
Dale didn't seem to know much about Adventists. Doug told him Adventist roots are in Methodism and that my most recent college teaching was at Nebraska Wesleyan University when we lived in Lincoln. This gave us “connection”. What he was getting at when asking what Adventists believe was to determine if any of the treatments Doug might need--such as blood transfusions-- would interfere with Doug's religious beliefs. (He actually said—“Like Jehovah Witnesses?”) Since Doug has had 7 transfusions already Dale was reassured by Doug that he is putting his life into the hands of the transplant team.
Dale is someone I can turn to during Doug's treatment. He said if he likes people real well he'll give them his pager number to contact him on weekends otherwise he's available M-F.
He then gave us his pager number!!
I feel more comfortable now with having someone who will watch out for us and help us know who to communicate what to as needed with all these people involved on the bone marrow transplant team:
The Doctor
The Oncology Fellow
The Physician Assistant
The Nurse Practitioner
The transplant coordinator
The transplant nurses
The dietician
The chaplain
The pharmacist
The OT/PT therapist
And Dale, the social worker.
Dale's report from our visit is put in Doug's chart for the entire transplant team to refer to. A copy is sent to the team at the Zane Lipsey hospital which is where Doug would go if he needs to be hospitalized. The staff assisting us there will also know our background and some of our unique-to-us peculiarities.
Dale also gave us a feel for the apartments the Medical Center has for patients being treated on an out-patient basis. He also told us about the hospital room should Doug need to be hospitalized. The hospital room he described is also like a one-room (fairly good size) small apartment--with a small refrig, flat screen TV, CD/VCR, extra bed for the caregiver if she wants to stay, shower, etc. The rooms have Internet access so we’ll take Doug’s laptop. Each room is on a special air exchange system. No plants or flowers are allowed. The nurses are specifically trained for transplant care and will "dispose" of things and people if they interfer!!!
Before the transplant a chaplain meets with us to do a "blessing" that signals the beginning of a new beginning but one that requires us to forever live with cancer.
Dale wanted to be sure we knew what we were getting into and made us feel very cared for. He also agreed with us that compared to what we shared with him about what Doug had already experienced the impact of the transplant and the recovery probably wouldn't be much worse. Fatigue is something we know about but this time will also know it is 'normal'. The potential for infection will be our greatest enemy.
The 3 tests Doug had after the social worker's visit happened at St. Paul’s hospital (there are 4 or more hospitals on this campus). We were there 6 hours. Much of the time we were waiting in the waiting rooms. All the tests were ones Doug had never had before. All were in different areas of the facility.
During the skeletal scan Doug said his whole body was "radiated". It was different from the MRI he had two weeks ago! The next was the MUGA (heart test). They drew his blood then he had to wait 1/2 hour in the nuclear medicine area before going back for the test. The technician put electrodes on his chest and he lay on a pyramid-like machine. The tech tracked the rate of Doug’s blood flow through his ventricles via her computer. She also tracked the rate the left and right ventricles opened and closed. This gives the doctor Doug’s base line as the large dose of chemo can impact these functions.
The other test was a pulmonary test where Doug was put into a glass chamber and had a tube in his mouth. The technician told him when to breathe in and out, slow, fast, deep breath, shallow breath, etc. At times the tech didn't have any air flowing into the tube while at other times there was air flow. I don't understand it all but probably even Doug didn't either.
We do have access to all his test results online at a secure website. At our next visit we will go over them with Dr. Collins. It is just amazing what they can see and do with ones body these days!
This morning he and one of his collegues flew down to the Valley. They will return tonight.
We are learning to live with cancer.
~Carole
