Yesterday I walked on my own power from the 4th floor observation rooms to the 5th floor Oncology Infusion Services department.

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!

I’ve finished my first round of chemotherapy! Heading home now. I’ll write in much more detail when I get home.

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

The pain from last night only got worse as I slept. I spent the night sitting up in bed, a position that didn’t hurt as much as others.

After waking up I had the pleasure of finding that all attempts to get out of bed were met with intense pain. Pain that motivated me to stay in bed and not move a muscle. Except for the muscles used in taking two Percocet, and calling the oncology nurse (Sharon) that works with Dr Norman.

I described the pain (shoulder pain, likely because of spleen interacting with diaphragm) and she paged Dr Norman to ask his advice. She called us back with the request that we head to Urgent Care, where she’d ordered some pain medication and a CAT scan.

We also called our friend Lauren (an EMT) for backup.

I got into the car verrry slowly and Jana drove Lauren and I to the hospital post-haste.

We checked-in at Urgent Care and were admitted right away, skipping triage and much waiting. Vitals were recorded, a bit of blood was drawn, and then we got started on medication.

First was the awesomely-named anti-nausea drug Ondansetron, which would be a great name for a disco robot.

Then they got to the actual pain medication: Dilaudid. It’s just about as close as you can get to pure opium. I didn’t notice tremendous effect, but my dosage amount was pretty low.

Then: a surprise visit from Dr Norman! He stepped in to give us a briefing on the next steps. He didn’t have the full pathology report on the lymph node yet, but he was hearing unofficially that there appear to be colonies of more than one type of lymphoma. His suspicion is that I could have LPL that has spun off an instance of DLBCL along the way.

That’s right… I may have double cancer. Trump card for sympathy! Twice the bounty when I beat them both!

The chemotherapy would be intended to attack and destroy both cancers during the series.

We launch our attack tomorrow at 10am.

After some time to let the medication kick in, they took me downstairs for another CAT scan. We wanted to ensure that this pain wasn’t due to some sort of rupture or bleeding. Sure enough, my spleen is totally intact.

As the level of pain itself was not reduced, and judging from the serious effort it took to get out of bed this morning, the doctor in Urgent Care recommended that I stay in bed overnight in an observation room. A scant hour later we were on our way to the room.

And so here I sit, just about ready to fall asleep. Tomorrow will be a big day: the beginning of a long series of chemotherapy. I feel anxious about having my body burned from the inside, and dealing with sickness and reactions I’ve never known. But I’m ready to start removing uncertainty, to continue trusting in the support of friends, and to give these cancer cells a much-needed “etiquette lesson.”

Current state of lymph node biopsy: the analysis is “complex” and they’ve sent it to the UW to have more subtyping done. Hopefully I’ll get a call early tomorrow with results and an invitation to come in and start chemo same-day. I really want to try out this neat chest port!

Speaking of chest ports (and surgery to install them), my steri-strips have all come off. Now I just hope I can clean the adhesive off. The areas around a couple of incisions are real sticky!

More motivation: this morning I got a pretty intense pain in my shoulder. It wouldn’t go away unless I found just the right position, and breathing in was not allowed. Shallow, uncomfortable breaths.

I suspect this is a result of my enlarged spleen pressing up against my diaphragm. You see, in our very beginning stages of development, our diaphragms are all located very closely to our shoulders. They get linked into the sane nerve networks. Then, as we grow older, our bodies stretch and our diaphragms move further down our bodies. But the wiring still has them connected with the shoulders.

The pain from this morning eventually went away. We went to a movie, then to a friend’s BBQ. While at the BBQ the pain returned with significant vengeance! Such a buzzkill. And it is still making itself known right! Two percocet have been sent to die for their dear leader.

I am really looking forward to the start of treatment; the spleen returning to normal size, the night sweats going away, less (yaaaaawn) fatigue.

I know it’ll be like running a marathon. A six-month-long, poisonous marathon. But I’m still excited to hear the starting pistol, and to turn the first corner.

Bring on the chemo.

The surgeon (Dr Kent) called a few hours ago in the middle of a nap; I’d had a Percocet, I was tired, and the loud fan was on. He was politely asked by a 2007 recording of myself to leave a message.

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.

Yesterday I did yet another test; this one to check the strength of the left ventricle of my heart.

A few of the chemotherapy drugs, especially one named Adriamycin, can (but don’t always) have a toxic effect on the heart. Before starting treatment with it, Dr Norman wanted to find out the current strength of my heart. If we suspect that my heart is getting hurt by the drug, we can retest and find out for certain.

The process began with the technician, Red, taking a few CCs of my blood. Then he sent us (my brother and I) away for a half hour while he mixed my blood with a radioisotope.

One coffee and snack later, we returned and Red gave my newly-radioactive blood back. Only slightly radioactive though; just enough to be able to be detected by their camera.

Next I laid down in a bed just like the ones used for the CT and PET scans. Red attached some electrodes to me that would configure their computer to time the scaning to my heartbeat.

A MUGA scan consists of three different viewing angles of the heart, each individually being collected for 4-8 minutes (they reposition the sensor plate between each series). During this time, the sensors are timed to take 20 snapshots per heartbeat.

Later, the tech can find which frame has the left ventricle fully expanded and which has it fully contracted. Then look at these two frames across each series.

From all of this they can derive an estimate of how much of the left ventricle’s blood gets squeezed out each time.

Normal range is from around 55%-75%.

Red said that I have what they call “a good squeezer” and that a quick estimate (by looking at a small set of the frames) is that I’m beating 74.5% of my left ventricle blood each time.

Woo hoo!

That should be the last active medical thing to happen to my body this week, but now I have to deal with removing my surgical wrappings. Peel peel peel. Eww.

We started early today, with a check-in time of 7:30am. My brother woke up really early and made the trip up to be our designated driver.

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!

Within twelve hours I should be plus one chest port and minus one very-biopsiable lymph node.

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

Wish me luck!

I’m fairly certain that we’ll get good data on this cancer from a biopsy of the neck lymph nodes that the PET scan pointed out.

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.

• Learned of possible information-having lymph nodes in my neck
• Met awesome folks with great advice at the Lymphoma Networking Group
• Got the ball rolling with SCCA second-opinion scheduling
• Requested that Group Health send my records to SCCA
• Scheduled MUGA scan for next Tuesday
• Scheduled surgical consultation for Friday, and surgery for Monday

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