Every once and awhile I feel pain near my ear similar to what I felt before the palsy started up, and I start to worry. So far, no regression.

I’m on the good part of the chemotherapy recovery period now, so other than being low on energy I feel great!

Last week my groove got messed up!

It started with a pain in and under my ear. A soreness that seemed to get better if I massaged it, but would eventually come back.

Then, on Friday evening, I looked in the mirror. My right eye was open more than my left. When I blinked, the right eye wouldn’t close as fast as the left.

My smile was also looking a little off-balance: like the right side of my mouth just didn’t have its heart in the game.

Over the weekend the ear pain increased, and so did the paralysis. Soon I couldn’t lift my right eyebrow, flare my right nostril, or move the right side of my lips at all.

The physicians read it as Bell’s Palsy. It’s thought that a viral infection caused the inflammation of one of the facial nerves (hence only one side of my face). The nerve lives within a hollow tube of bone, and the inflammation causes the nerve to expand so much that it damages itself by pressing against its constraints.

The prednisone from the chemotherapy reduces the inflammation, and I’m on medication that’s aimed at any possible infection. But until the nerve repairs itself, the right side of my face looks unflinchingly serene.

Like it’s taking the day/week(/month?) off.

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!

As long as I don’t vomit on my keyboard.

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.