WAITING and more WAITING

You haven't heard from me because nothing of any substance has happened since my first visit with the lymphoma specialist on January 9. At that visit, she explained that she really needed tumor tissue with associated genetic markers to know the specific type of lymphoma. Basically, all lymphoma diagnoses lead to chemotherapy. The exact chemotherapy regimen and prognosis varies, depending on whether I have a Hodgkins or non-Hodgkin's lymphoma and the primary cell type.

Since I already had a prior interventional radiology (IR) procedure at Overlake that didn't get sufficient tissue, Dr. Poh recommended a surgical biopsy. The Lymphoma clinic made a referral to the Surgery clinic and that is when the waiting began. Despite many phone calls, we did not hear anything for more than a week. Finally, this past Tuesday on January 21, I had an appointment with the surgeon. He had very carefully reviewed the anatomy of my tumor on the CT scan and, as he showed Diane and I, the anatomy was all quite complex. For my medical friends, the lymphoma extends from about T 10 to L4. The vertical dimension is 12 cm. It wraps around my aorta and envelops the renal vessels. He was not confident he could do a laparoscopy and get sufficient tissue without having to revert to a laparotomy (open abdominal surgery) where I would need to recover for a month before they could start chemotherapy. Therefore, he sent an urgent referral to Fred Hutch interventional radiology. . But it didn't get treated as urgent despite rather blunt messages [essentially emails) from me in the electronic medical record. As of today, the biopsy is scheduled for next Tuesday the 28th. I've asked for a pathologist to be present to make sure we get sufficient tissue. That is where things stand as of today.