We made the long trek to DUMC yesterday, arriving at about a quarter till 3. I'd looked at the map and determined that the 'Main Entrance' was the entrance closest to the clinic (which I understood to be in the hospital ::Cough, Cough::). We parked in the garage across from the hospital, wheel-chaired Alison up, and went down the elevator to the tunnel that connects the garage to the building. All was well. However, once we were in the building and I started going down the halls to where I thought Surgical Oncology was, the building started looking less and less like my map. Finally we got to this elevated sidewalk - think Ewok bridges - that connected building to building to building. I realized that the hospital is more than meets the eye.
Of course, Alison knew I was wrong and let me know it.
We made the appointment on time, but I had to jog while pushing the wheel chair down the Ewok bridge. If you ever go to Duke Hospital, know that you're in the hospital, not the clinic.
Here's the update:
We know less now than we did before we saw the doctor. He wanted his own pathologist to re-examine the bone marrow biopsy. He said Alison's tumor just wasn't acting like, didn't have the normal characteristics and symptoms, of Carcinoid Tumors. The profile just didn't fit. His advice in terms of treating her cancer was even more vague. No chemo yet since her red-blood cells are down and her good marrow is working overtime anyways. The chemo would do more harm than good. No radiation therapy yet. He did say we could begin injections of sandostatin. We start Wednesday.
His plan is to get to the bottom of this case by testing her with a I-131-MIBG scan. He also wanted to do a CT guided biopsy of the tumor. And finally, he's talking to their stem cell lab (remember the Bush administration hot topic(though his beef was with Embryonic)) in regards to taking her core sample. They'd withdraw blood from the left arm, filter the blood to extract certain cells, and inject her blood back into her right arm. The cells they collect could be frozen for future use fighting the effects of chemotherapy and also to reduce the reliance upon sibling bone marrow transplants, should it come to that.
The thing I took away from the meeting was his explanation of how to read the CT and bone scan. He interpreted the pictures for us. A few posts ago I posted a picture of Alison's skeleton. If you look at that picture, note the extra dark hips (extra white really but I put it in negative for the site), extra dark shoulders, lower spinal chord, top of the skull, and a little in the rib cage. That darkness/lightness indicates more active bone marrow. Active with cancer? Possibly, but more likely is that her bone marrow is working extra hard to keep her healthy. That's a cause for her severe pain in all the aforementioned places. The other cause can be seen in the CT scan:
Note the candy-cane ruler in the lower left. That measures her tumor. What I didn't understand before is that the tumor isn't just behind the candy cane. It's the grey mass that extends below, wraps around the spinal chord, and extends into her right side. That overlapping of the lumbars is probably hitting some nerves.
So we know nothing and a lot at the same time. We'll hear from the Duke Doctor by Friday. I'll keep you posted!
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