Ryan had his spinal tap with more intrathecal vincristine and his final bone marrow biopsy of the "induction" phase (explantion of this term later in tomorrow's post). All went well with the procedures, but no communication with his assigned oncologist. Dr. Rauch did the chemo injection and asked when he was scheduled to see the other oncologist - he was surprised and seemed a bit dismayed that we had had no contact with the other physician and no scheduled follow up. All the tests since discharge got scheduled because of our pushing for them rather that because a physician was directing his care.
Since Ryan had such a severe spinal headache after the last LP (lumbar puncture) and had no pain meds left, I called the office to ask for a prescription for pain meds and refills on his antibiotic and antifungal meds which Dr. Rauch said he should continue. The response from the nurse was that since he hadn't been seen in the office she doubted she could get a prescription for him. And it was 45 minutes until the office was to close. The Mama Bear in me rose to the surface and I headed out of the recovery room to deal with this in person. Saved by the bell - by the time I got to the other end of the hospital (a brisk hike), the nurse called back to say she had the prescriptions but I needed to pick them up soon before the office closed at 5. Good thing since it would probably have been pretty ugly given how frustrated I was.
Ryan and I both came to the conclusion that we need to change outpatient oncologists ASAP.
More frustration earlier when the hospital charged a co-pay for a procedure that doesn't require a co-pay and my call to the insurance company got bounced back and forth between the Blue Cross portion (in-patient services) and the Cancer Resource Center (covers care at designated "centers of excellence").
The good news of the day was that Dana Farber called with an appointment for Ryan to be seen there on Tuesday. Wouldn't you know I missed their first two calls because I was tied up on calls to the insurance company! They apologized for the short notice, but I jumped at the opportunity.
Tim was away in Malone for some meetings he couldn't miss and Sophia had to work, but Ryan and I desperately needed to be seen by a physician who could tell us what is going on. I called to tell Tim what was going on, and he was frustrated that I was talking too fast, etc. I was frustrated that he wasn't coming back to go to Boston with us since inevitably there will be questions he has that I don't think to ask. Yet I understand that the whole world can't stop because of Ryan's illness and that Tim has responsibilities beyond home & hearth.
Shannon had a miserable day - her throat is still very sore and she can only speak in a whisper. And her poor cat is so traumatized by the change in environment that it won't let her sleep at night. So with Tim out of town, I went to bed with two insecure little girls in sleeping bags on my floor and Shannon sharing my bed and the cat closed in a nearby bedroom crying away.
Road trip tomorrow.
---Barb
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