We started the day by talking with Dr Norman about the schedule for the next few weeks, then went to the Oncology Infusion Center for blood tests. Then back to Dr Norman for more intrathecal chemotherapy. Then back to the Oncology Infusion Center for round six of six.

I’ve started up on the G-CSF shots again, plumping up my blood with stem cells so we can get back to preparing some autologous stem cell transplant ammunition. The side effects from the chemotherapy, combined with the side effects of not resting a ton after the recent lumbar puncture, have combined to be less-fun that usual. I’ve felt pain, then sickness from the pain pills. I’ve felt tired, and yet unable to sleep well at night. It’ll be nice to break this cycle!

After three days of the G-CSF shots, we’re starting up the daily blood count cycle. The first step is to watch for my white cell counts to be high enough, after which we’ll starting sending my blood to the SCCA for CD34+ counting.

And I just got the call that my white cells are already high enough. Blood is on its way. Let’s rock and roll.

When we got to the desk the friendly staff announced “you must be Tom Music!” My reputation (and my appointment) preceeded me.

They took me to my room, showed us where to find the snacks and then an oncology nurse came in and gave me a “chemo teach” — a summary of all of the drugs I was going to receive, and the possible side effects.

In the meantime Nurse Ruth Ann was plugging into my chest port, preparing all of the equipment needed to start my magical journey.

The waypoints for the day were Adriamycin, Cytoxan, Vincristine, then Rituxin. The Adriamycin came in three large red syringe canisters — like some sort of massive poison Jell-O shooters.

Before we began, I got more information on the UW’s analysis of my lymph node biopsy. A few things stood out in the report:

• There were two separate colonies of cancer cells
• It could be that one was a slow-moving, and spun off a more aggressive type
• It could be that both are just different forms of a more aggressive type

Even though we didn’t have a definitive result yet, the likely presence of an aggressive cancer meant that R-CHOP was the way to go.

One more cc of Dilaudid helped to get me more comfortable, and then it was time to get started. In went the Adriamycin. She did that one by hand, since they need to be able to stop instantly if anything looks like it might be leaking. That stuff can burn!

Next the Cytoxan. Then lunch arrives! A tasty sandwich for me and my suite-mates. Grog all around!

The Vincristine starts up and goes without a hitch. Next up is the Rituxin. This is one that can cause allergic reactions, so they start really slow and crank up the pace every half hour.

We start at 50cc/hr. Little to no trouble. Bump it to 100cc/hr; starting to get a bit of a rash. Breath feels “heavier.”

My dad flew into town from a business trip so he could be around for support; he and my mom arrived just when the Rituximab was starting to get to me. Poor kids, they missed the easy part!

They crank the drip to 150cc/hr, and the rash gets a bit stronger. My head is itching. My stomach starts to feel bad. We go to 200cc/hr and there was pain in my belly and up my torso inside. Made use of a blue bag. It was time to stop cranking up the pace: we’d found my maximum.

It sounds like the pain I was experiencing could be some immediate tumor cell death. My spleen was a major cancer hog, and I had a ton of lymph nodes up and down my abdomen that were enlarged. That is indeed where most of the fighting would take place.

I’ve developed a fever during the Rituxin, so they Tylenol me up. As folks help swivel me off the bed into a wheelchair, I notice that flexing my abs doesn’t hurt my shoulder anymore. Hooray for progress!

We had a lot of questions that would be difficult for the doctor to answer. Questions that make people who’ve already been through this ideal resources.

We picked up some food on our way; each meeting starts with a potluck. We put on name tags and started getting to know people.

Soon everybody moved to a room next door with their plates and we sat around a large table to begin introductions. Each person introduced themselves in a different way, but most included some part of their “Cancer ID” — if they had lymphoma, if they were a caregiver for someone with lymphoma, what kind of lymphoma, how they were doing.

After introductions, we started letting our questions flow. We got answers to our questions, answers to questions we didn’t know to ask, and advice from people who’d been through it.

Some tidbits:

• Stay positive, do the things you love, be surrounded by positive people. These are the things that will keep you from wallowing in despair or self-pity.
• R-CHOP did not keep most people from being able to work. Stay positive, stay motivated.
• Don’t put all of the obligation of moving things forward on your doctor. Be active and persistent in getting scans scheduled, educating yourself on your situation and possible courses of therapy, and being able to effectively discuss diagnosis and treatment. Through this you can help channel the doctor’s attention, energy, and expertise where it is best applied: on evaluating and treating the lymphoma.
• Be proactive in discussing health with family and friends. Many people will be unsure about what kinds of communication are OK and not OK with you, and this can create stress in friendships or family relationships. Make your willingness (or non-willingness) clear. Additionally, when you need help, make sure people know!
• There are cancer retreats at Harmony Hill on Hood Canal that are free for cancer patients and survivors. Awesome.
• We received some glowing recommendations of some lymphoma specialists to see at SCCA.
• Chemotherapy nurses have good advice about treatments, side effects, and how to mitigate them. Use their experience and expertise!
• Prednisone (part of CHOP) can be an emotional roller-coaster. And if you stop it suddenly without stepping down in doses, you’ll hit a brick wall and have no energy at all for the next few days.

It helped tremendously to talk to others who had done this before, and to hear about what they (and their spouses) endured to get through it. It was very encouraging, and I recommend it to anyone newly diagnosed with lymphoma.

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