Lymph nodes all over my body that were enlarged and opaque had returned to normal-sized translucency. My spleen has shrunk from enlarged-size to much closer to normal. Observe!

Spleen as seen in mid-June

Spleen as seen at the end of August

From what Dr Norman sees in the CT scan, he thinks that there is “a lot, lot less cancer. Practically nothing, if not nothing left.” If there had never been any splenic involvement, he’d call this a “complete response” — we can see through the lymph nodes and there is no sign of cancer left.

But since the spleen is opaque (even when healthy), and since we don’t know the exact size of my particular spleen when it isn’t chock-full of cancer, we need more data before we can say that it’s cancer-free. If we do more scanning after further treatments and find that the spleen hasn’t shrunk any further, we may be able to retroactively call this a “complete response after two treatments.”

The speed of this response is very encouraging; both cancers have been swatted down to nearly-untraceable levels. Just as with antibiotic treatment, you don’t stop when the infection appears to be gone.

We want it to go away, and we want to break its ability to come back. From Dr Norman’s interpretation of my response to treatment, this is a real possibility.

There’s still plenty of work to go:

• I may have developed some lactose-intolerance. Still investigating.
• Extra hot/cold sensitivity has shown up around some teeth, and I’m going to get it checked out by my dentist.
• One of the lymphomas may have spun off a diffuse large b-cell colony, which makes prophylactic intrathecal chemotherapy a (slightly frightening) consideration.

But even with all of that ahead, the (possibly) complete response after one-third of the treatment plan is a very encouraging sign. It’s good to get good news again!

The message was that the initial pathology from the lymph node biopsy confirmed the bone marrow biopsy of lymphoma. They’ve sent my node (or slides from the node, or at least some part of it) to UW to have some additional stains and markers done on it for subtyping.

He invited me to schedule a phone visit for after the results are in, so I’ll do that in addition to following up with my oncologist. I really like that Dr Kent is still interested in my case, even though all the cutting is done. Additional interested experts = a happy Tom.

This weekend we had a moment of doubt; the surgeon (Dr Kent) had recommended that we remove a lymph node from underneath my arm, but the oncologist (Dr Norman) was originally talking about one from the neck. Not knowing whether it was important to stick with the neck, we sent notes and called Dr Norman’s office to get his opinion. This would turn out to be a good move.

They called me in from the waiting area about an hour before I was scheduled to have surgery begin. They started an IV in my hand and I got a visit from one of the anesthesiologists involved. Do I want to be deep under (non-dreaming), medium under (dreaming, still unconscious), or conscious but loopy. Deep under, please!

Next, Dr Kent came by to discuss the operation. The flight plan that he wrote and I signed last week was about the chest port and underarm lymph node removal. Dr Norman called and chatted with him that morning at our prompting to share his intent. Dr Kent decided to revise the flight plan to allow for taking a neck node if necessary. I initialled, and we were ready to go!

They started with giving me Versed, then wheeled me into the operating room. I remember the operating room very briefly, and I seem to remember them asking me to keep telling some random nonsense story. That story part might be some dream from last night. I can’t exactly remember. Versed!

Then I woke up, and I was hurting. I had clear dressing bandages, four in total. Two for the chest port installation, one under my arm, and one on my neck just under my jaw.

It turns out that the underarm node was tougher to reach than expected, and they went for Plan B in the neck. It’ll be a more visible scar, but that’ll just make me look tough.

It’s a good thing we expanded that flight plan!

After waiting in the recovery area for awhile, they wheeled me out to where Mike had pulled the car around. They don’t let you just walk out of there.

We came home, ate food, and napped.

I’m tender in where I got cut open, but there isn’t much as far as constant pain. Gotta leave these dressings on for a day or two though.

And they shaved half of my chest and one of my armpits. I feel so asymmetrical!

Then we’ll keep checking for biopsy results and seeing how soon we can start treatment.

Wish me luck!

I say this because I can feel a couple nodes when I press beneath my jaw bone. It’s fascinating, creepy, and scary all at once. I’m pretty sure they’ve got the bad cells in them; they’re enlarged and pretty firm.

On the plus side, this might mean I get to keep my spleen!

I’m glad I’ll have something to show the surgeon during our consultation tomorrow.

And now I go to the dentist, where I will not be getting any cancer-related treatment.

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

It like it. Plus it means I would be under general anesthetic instead of the creepy-sounding conscious anesthetics. Woo!

He says the evidence is pointing strongly toward lymphoplasmacytic lymphoma. It’s not an aggressive cancer, which is nice. But that very trait also makes it recurrent. You can treat it, most of it will go away, but it will eventually come back again and again.

It sounds like the evidence isn’t totally conclusive yet, though. He’d like to get a tissue sample from an affected lymph node, and so far the only ones we know of are in my abdomen. We’re going to do a PET scan to see if we can find any more accessible ones to remove and dissect. That PET scan isn’t until the beginning of July.

This is starting to take a long time!

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!