He warned us that the lymph node may not actually have any information about what specific kind of lymphoma we’re looking at, or it may even contradict the indications of my bone marrow.

We also learned that he’s not entirely sure it’s lymphoplasmacytic lymphoma. I’m unusually young for it, and a lot of the diagnostic traits that point toward it could also apply to diffuse large b-cell lymphoma or (DLBCL). DLBCL is a much more common, and is also much more aggressive than lymphoplasmacytic lymphoma (LPL). On the positive side, a result of the increased aggression is an increased possibility of permanent remission.

Also, we’re getting the process started for a 2nd opinion from a lymphoma specialist at the Seattle Cancer Care Alliance. We’d really like to know for certain what this is before we start killing it.

We asked about the treatment plan Dr Norman is currently imagining. He’d treat LBL and DLBL very similarly: with a chemotherapy regimen known as R-CHOP. The “CHOP” part contains four different chemicals that have been used in chemotherapy for a long time. The “R” part stands for Rituximab, a monoclonal antibody that shows some good cooperative effects when paired with CHOP.

We’d likely do 6 cycles of R-CHOP, which is usually done with one day of infusions and then three or four weeks of recovery before the next one. Looks like about 6 months worth of chemo.

One side effect: the H part of CHOP, also known as “Adriamycin” is toxic to the heart. Dr Norman wants me to get a MUGA scan to make sure my heart is strong enough to take it. Scary!

Next steps:

• Group Health sends my medical records to SCCA
• Group Health’s corporate masters approve the referral to an SCCA oncologist
• I will call to get second-opinion scheduling started at the SCCA
• GH Bellevue’s surgery scheduler will call to set a time for my chest port/lymph node operation
• I will call to schedule a MUGA scan

We drove to the Group Health Bellevue Medical Center nice and early; we didn’t want to risk missing the appointment for this test, since it seemed so tough to get scheduled.

Apparently the street address for the facility is so new that online mapping services provide a route that is completely wrong, but with 100% confidence.

Being the adaptable folks we are, we were able to locate the correct location for the location to which we wanted to locate ourselves.

After checking in I was lead down to a mobile scanning truck that housed the $1.1M PET scan machine. They don’t have enough people needing PET scans to buy one for each facility, so they just bought one and cart it around between two facilities.

The technician, Tim, started by briefing me on the process. Next, we moved to one end of the mobile unit where he gave me an IV injection of a radioactive sugar after testing my blood sugar level. Once the sugar was delivered, I was to sit as still as possible for 30 minutes. No reading books allowed, as the repetitive motion of turning the page would draw more of the sugar to my hands.

You see, the preparation for this test is to fast for 6 hours prior. They want your blood sugar to get low. They want the cells in your body to be ravenously hungry. When the radioactive sugar is injected, your cells start to fight over it. Cancer cells, metabolically super-active as they are, tend to grab the sugar more than other cells. The radioactivity is then concentrated in the cancerous areas.

The next step was to lay down on a table that moved back and forth through the toroidal machine that was actually a hybrid CAT/PET scanner. They start by doing a CAT scan of the entire body to get a physical model of the body, and then do the PET scan to get an image of where the radioactivity is concentrated. Put them together and you have a 3D physical map of the body with shiny spots that might be cancerous.

Slick.

We celebrated the completion of the scan by grabbing food and heading south to spend a relaxing weekend with family for the 4th.

We’ll talk to Dr Norman on Monday to see the scan images and get our next steps.

I had to drink two big canisters of a “berry” flavored Barium smoothie as a contrast agent.

Also, using paper tape for immobilizing the contrast IV was awesome. Much better than the plastic that was used last week; having that pulled off was in the realm of the biopsy pain, but more sustained.

I’m thankful for all scheduled medical stuff being done for the week. I need a vacation.

Then there was a bunch of stuff that would sound gruesome if I wrote it out; he took a little bit of bone marrow, a little bit of bone, and it really hurt (but the hurt was in short bursts).

Also, my hip bone was so strong that it bent the tip of the tool he used.

Now I have a band-aid on my hip and it hurts to walk. Looking forward to a (hopefully) negative result!

After looking at everything for a little while, he offered his current 80% hunch: Hodgkin’s Lymphoma. The other 20% side of the hunch goes to some sort of currently undetected infection.

He described Hodgkin’s as being quite curable, usually after weeks or months of chemotherapy and sometimes radiation. But before doing anything like that, we first need to find out if the hunch is correct.

The prime way to find out if it’s lymphoma is to biopsy lymph nodes and bone marrow. The bone marrow is no trouble, as hip bones are nice and accessible. If he doesn’t find any cancer in the bone marrow, the next step would be to biopsy one of those abdominal lymph nodes. This gets problematic; my spleen is massive, and is in the way.

He might have to remove it.

First things first, I headed to the lab and have them perform an entire page full of blood tests. Then, in preparation for the possible removal of my spleen, I got some vaccinations for infections that can hit the spleenless hard.

Tomorrow the doctor will be in during his lunch hour to give me a bone marrow biopsy. I can hardly wait!

It did not.

Today I got a massage, and when the masseuse pressed down on my back I could feel something in my abdomen complaining.

I went to the Urgent Care at Group Health Cooperative in Seattle. Lots and lots of tests ensued, including (but not limited to) blood, ultrasound, and x-ray. Five hours later I was discharged with instructions that my spleen is too big and I have an iron deficiency anemia.

On the way out we stop at the pharmacy and pick up some prescribed iron supplements. Also, as per doctor’s orders, I scheduled a CAT scan and an appointment with a Hematology/Oncology specialist for the 17th and the 22nd, respectively.

We arrived not knowing what was causing the pain, and we got answers for that. But we also had new questions; why was my spleen enlarged? Will the iron supplements be enough to shrink it?