First, we got some good news: the CT scan after my fourth round was mostly unchanged from after my second round, so we’re calling this a “complete response after two cycles” and that the disease has remained stable after four. The protocol is to do two more rounds beyond measured stability, so we’re probably going to finish at six.

Next, having Bell’s Palsy sequentially on my right and then my left was a little bit concerning. We decided that it would be a good idea to run a series of tests to make sure it wasn’t something more nefarious.

The first step was a series of tests on my cerebrospinal fluid, which called for a lumbar puncture. I sat upright on a bed, facing sideways with my feet on the floor. Dr Norman had me lean as far forward as I could, with my chest resting on a pillow on a cart. Jana held my hands, which really helped deal with the anxiety. Dr Norman gave me two injections of lidocaine anesthetic, which ended up being the most painful part of the procedure.

I actually didn’t feel much pressure or poking when he inserted in the tool that he used to remove the fluid. When it was all done I was surprised to learn at the liquid that sits as a cushion around the brain is totally clear! They’re running a bunch of tests to make sure there isn’t anything in the fluid that could be more problematic. So far, nothing alarming.

To avoid any headaches after the procedure I rested on the bed for a while as a nurse asked me some pre-MRI interview questions.

Yes, I got to have an MRI of my brain. It was awesome. I got a warm blanket, an eye covering (to protect my stubborn-to-close eye from the fan in the machine) and some good earplugs. The tones that the machine made were quite loud at first, but once I adjusted they were relaxing. Almost meditative in their repetition and variation.

They didn’t find anything abnormal in my head other than the expected signs that there was inflammation and activity around my facial nerves. While I didn’t actually expect it, I was relieved to have confirmation that there wasn’t lymphoma snuck in there.

Here is a triumphant rendering of one slice of the head MRI, for your viewing pleasure.

The MRI was a nice break. We did some of the chemo before it, then came back for more to finish the day. Things seemed to go as normal. This time I didn’t invite the hospital food in; I think some of the chemotherapy-effected sensations I had last time have contraindicated it in my head. Bleh.

The other big thing: we’re preparing to harvest and freeze stems cells. Since my body is mostly (hopefully entirely) cancer-less, now is a good time to boost production of stem cells and start them circulating in my blood. The boosting and circulating is done by giving myself more shots of Neupogen. For the next few days I’m giving myself the normal dose each night. On Monday we switch into high-gear and double the dosage. I’ve received multiple warnings that the big doses can cause bone-pain, and I’m not looking forward to it!

Once the count of stems cells in my blood is high enough to harvest, I’ll go in for a few days of apheresis at the Seattle Cancer Care Alliance.

We’re gathering these as an insurance policy. We don’t know what’s going to happen once the effects of the last round of chemotherapy wear off and my body starts moving back toward equilibrium. In the best case scenario: lymphoma never walks these halls again. Worst cases: we see cancer reasserting itself right away, or within the first year or two.

If it comes back quickly we want to have options; with a cache of my stem cells, one such option would be an autologous stem cell transplant. It would be really nice to not need that option. It sounds like the option is a major pain. But we need options, even the painful ones.

And so that is where we stand right now. On Monday I go to the SCCA to have them eyeball my veins and make sure they would handle the kind of flow they need for the apheresis. If not, things get more complex. Removing my chest port and inserting a different kind of veinous catheter complex. Then I’d have to get my sixth cycle of chemotherapy through my arm.

I’m hoping my past success in donating blood is an indicator of good veins. I’ve got practice!

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

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