This is going to be really long. Check with your stomach first: is it growling? Grab a snack before starting to read. I care about your comfort!

At the beginning of December we did a bunch of testing; a PET scan, CT scans, a lumbar puncture, blood tests. All came back clean. Complete remission! The next steps were to come back in a few months for a CT scan and blood tests. Vigilance-mode.

And so we prepared to depart on our “Victory Lap” trip to Europe. Paris, the French countryside, Luxembourg, Belgium, and Amsterdam. 13 days, all told. Delicious adventure, beginning on Thursday the 10th.

On the Monday prior I felt absolutely great; my energy level was high, I got a ton of work accomplished and cleaned up the house like crazy.

On Tuesday we met with Dr Norman for the official all-clear. I had a little bit of pain near my ears that reminded me of the fun times I shared with Bell’s Palsy.

On Wednesday the pain was around just a little bit. It turns out that the “little bits” of pain were the tip of an iceberg. Wednesday night I found out the full size of the pain iceberg. I’d describe it as incredibly sharp and burning. Like a well-honed fireplace poker. It had me curled up in bed whining, and Jana calling the consulting nurse line.

They sounded like they thought it was ear-related, like water or infection. They recommended applying the Fentanyl patch that I’d been prescribed by Dr Norman after complaining of similar pain in late November. The patch delivers a continuous stream of opiate painkiller into the bloodstream after an initial 8-hour soaking-in period. By applying the patch at night we would know by morning if I would tolerate it for the flight.

The first noticeable sign that the patch was in effect was my inability to keep food down the next morning. My body isn’t used to handling continuous or large amounts of opiate painkillers, and it didn’t react well.

The second noticeable sign was that I had some big problems staying awake. Every 30-60 minutes I would start to doze off. This made the flight itself largely indistinct in my memory. I brought along books and movies, and there was plentiful in-flight entertainment, but I consumed none of them. Instead I slept, and was excited when I was able to keep down the offered orange juice. Small victories!

We arrived in Paris, watched someone get scammed and pick-pocketed on the train, and eventually found our hotel. It was quaint and cozy, which is a pleasant way of saying old and small. The view from the window was the best part of the room. We looked out east upon part of the Latin Quarter.

A 15-second walk from the building was a crepe stand, and I was able to eat half of a chocolate crepe before I felt like I needed to stop. That patch made it hard to dive in and enjoy the food!

Not long after we arrived I collided with the iceberg of pain again. Curled up whining on the uncomfortable bed, the patch didn’t take away the pain. It just made me fall asleep every once and awhile. I slept in 30-60 minute bursts.

This continued for every night that we were in Paris. And also during some parts of the days. The patch eventually wore off, and I was able to eat food again, but the pain remained and continued to mess with my sleeping.

There was one day when we got out to do a little bit of sightseeing at Jardin de Plant and the Evolution Museum. Then there was another great day when we walked to the Basilique du Sacré-Cœur, Notre Dame de Paris, and Musée d’Orsay. I was really glad we got to have those together.

Eventually we checked out of the hotel early to go to the Hospital Hôtel-Dieu, and the hotel graciously didn’t charge us for the rest of our reservation. After a 20-minute wait the doctor in the emergency room took a look in my ear and said the pain was due to flying while having an ear infection. He prescribed an antibiotic and a codeine painkiller and sent me on my way.

We decided that recovering from something so painful would be best done in a relaxed and comfortable setting, and Paris didn’t seem like the place to find it. We contacted some family friends that live in London and they very generously offered to host us while I attempted to recover. We took metro to Paris Nord station and hopped on the Eurostar train to London. Once we were underway we realized: if the pressure change from the flight caused the pain, would the pressure changes in the Channel Tunnel do the same? Fortunately they did not.

In London we were treated to delicious home-cooked meals and gracious hospitality. But the pain remained. Near the end of the antibiotics course I could note no improvement. And the prescribed painkillers served to make me drowsy, but did nothing to melt the iceberg. So we went to the emergency room at the Chelsea and Westminster Hospital. After a 3-hour wait the doctor looked in my ears, looked for physical signs of meningitis, and then said that he thought there was some inflammation or water behind my ears that was causing the pain. He referred us to the emergency room at Charing Cross Hospital, specifically to see an on-call ENT doctor who would provide some better expert opinion.

This other doctor looked in my ears and said that she believed the pain was because I had water behind my ears and a bunch of congestion. She felt that the two were combining to create pressure that in-turn caused the pain. She recommended decongestants and not flying until it was improved. She noticed that my left eyelid was drooping a bit, but I felt that my right eyelid was probably under some light Bell’s Palsy effect (opening too much) and that my left eye was just compensating.

But the decongestants didn’t help. Even when I was all cleared up, the pain remained. Maybe we just needed to give it some time. We decided it was time to return to tourist mode, so we bid farewell to our hosts and headed to a hotel in Trafalgar Square. We got out for a short walk and a nice Italian lunch, but I spent the rest of the time miserable in the room.

I started to notice that my left eyelid was drooping even more, and my vision was a bit affected. Blurry. Sometimes double-vision, like when you go cross-eyed. And my legs and arms were weaker. And swallowing food was a little more difficult; like when you eat something really dry and it feels like it gets stopped-up in your throat.

And these things got worse. It was getting hard to put a glove on my right hand, because the two middle fingers were pretty much completely limp. My right tricep was getting less and less responsive.

New symptoms; it was time to go to the hospital again. This time we were closest to Guy’s Hospital. After a 30-minute wait we were taken a bed in the Major Treatment room, where we waited for another 30-minutes before seeing our first doctor. She did a series of tests, including a bunch of physical tests of neurological symptoms: testing reflexes, coordination, muscle strength, eye movement. There were definitely some problems. We shared with her the research that I had done online, suggesting the possibility of an auto-immune disorder called Myasthenia Gravis. She noted that it was definitely on her differential diagnosis list, but that the testing didn’t reveal the fatigue that is common in cases of MG.

She eventually deferred to a colleague, perhaps at the end of her shift, and he performed a similar battery of tests. His conclusion was that he’s not sure of the diagnosis, and would like me to stay in the hospital overnight to see a different doctor in the morning during rounds.

They put us up in the Victoria ward with a nice view across the Thames of part of the Parliament. Nice!

During rounds the head-honcho doctor did a truncated neurological exam and then chatted with us for a bit; his conclusion was that for them to diagnose me, we’d need lots more testing and scans. His recommendation was that we abort our trip and head home to the doctors already familiar with my case.

To the airport! Our hosts from earlier picked us up and took us to Heathrow. Such awesome folks. We owe them a tremendous debt of gratitude.

We spent a bunch of time on the phone trying to get ahold of KLM who had a direct flight to Seattle that we hadn’t been able to book online. After 30-40 minutes of being on hold, we gave up and decided we’d book at the airport. Um yeah, about that…

We were dropped off in terminal 3, and KLM was actually in terminal 4. An elevator, long hallway, another elevator, and we were at the inter-terminal train system. 26 minutes until the train to terminal 4! Maybe Virgin Atlantic has something, they’re here in terminal 3. We head back up the elevator, long hallway, and elevator. We learn that Virgin’s flights to the West Coast have all left for the day, but there might be something to NYC left. We head to the counter and wait. Each line only had 3 people ahead of us, but I don’t think either line moved. Time was up: if we wanted to catch the train to visit KLM, who we knew had a flight, we had to give up on Virgin. And so we did, making it to the train just before it departed.

Elevator, hallway, elevator.

We found the ticket purchase desk for KLM/Air France, and the line was epic. 3 hours epic. The flight left in an hour and a half, there’s no way that would work. And so I turned on international data roaming on my phone and used the Kayak app to find out that British Airways had a flight to Vegas leaving in a few hours. BA, however, was in terminal 5.

Elevator, hallway, elevator. Train back to terminal 3, train connecting to terminal 5.

While waiting for the train I decided to get some backup. I texted my Dad, who was aware of our plans for a quick escape and was listening for pings. It was 2 or 3 AM in the States and he and my Mom woke up to help. The plan was that they would try and book tickets for the BA flight online, quick and easy.

They tried and ran into some “Transaction Failed, return to the Home Page” speed bumps. We elevator, hallway, elevatored it up to terminal 5 and found BA’s line to be no less epic than KLM. There had been a lot of snow-related flight cancellations in France and on the US East Coast, so throngs of travelers were standing in line to re-book. Jana got in line and I found a place to sit. I was feeling really tired and my legs really weak. Staying on the line with my parents, they were eventually able to coax the BA site into buying economy fare tickets for the Vegas flight. I found Jana in the line and we escaped to the check-in computers. We were already in the system. Slick. It was just too close to departure to get seat assignments, so we had to visit the customer service desk where we find that we were “brilliantly” automatically upgraded to “economy plus”. It’s just line normal economy, but with better legroom. We’ll take it!

I foolishly ordered ribs and fries at a restaurant at the airport. At this point I could hardly swallow a fruit smoothie! It was frustrating to have food that I know to be tasty sitting in front of me, and not being able to eat it.

We got some bad news from my folks: the flight to Vegas gets in too late for us to make the connection to Seattle, so we’ll be staying overnight at a hotel real close to the airport. They took care of booking the hotel and the flight to Seattle in the morning. Two angels, they are.

We get back to Seattle and head straight to the hospital. They give me some IV Dilaudid and that provides my first sweet relief from the pain. Oh man, it was like putting on a warm blanket and removing that hot poker from my head at the same time. We did an MRI and a CT scan, and found out that the pain was due to a huge amount of inflammation of my cranial nerves. And the diagnosis for why there was inflammation?

There was lymphoma stowed away in my brain, and it had finally multiplied enough to cause obvious problems.

Recovery and treatment was going to require some time in the hospital. Virginia Mason to be specific.

They set me up with Dexamethasone to reduce the inflammation and get started fighting the lymphoma, and more Dialaudid to keep me above the pain. It worked. After a few days I was already seeing my neurological symptoms improving. My eyelid got better, and swallowing improved to the point where I could eat Cream of Potato soup. The double-vision overlapped more.

One thing that was annoying was the amazing love for Heparin shots. Hospital policy is that patients receive shots of Heparin a few times a day to keep them from developing DVT to inactivity. The shots go in your belly, and man do they sting! Even now, I have faint red circles from the shots. Protip: you can decline the shots. You just gotta be assertive.

Dr Feldman, the on-call oncologist for the first week had worked previously with a neuro-oncologist (Dr Taylor) that was based at Virgin Mason. That was a slick connection. She looked at my MRIs and was able to read them with the eye of a brain specialist. Together they put together a recommendation for two different chemotherapy series to be run at the same time.

The first is Depocyt, delivered intrathecally, which is built as a sort of time-release capsule of the chemotherapy agent Cytarabine. The second is a high-dose Methotrexate, administered through my chest port, affecting the entire body (including penetrating the blood-brain barrier). The high-dose Methotrexate course requires a hospital stay at the start of each cycle, because they want to closely manage my recovery after administering the deadly dose of poison. Once my body processes enough of it that the level in my blood is no longer dangerously high, I’m free to go home until the next round.

This time the cycle length is two weeks (instead of three), and the plan is for at least 4 cycles. We’ll do some measurement (via MRI) after the second round, and test CSF during each intrathecal infusion.

Now, two weeks after my first round of chemotherapy (which we started on Christmas Day), I’d say that I’ve recovered about 80% of what I lost due to the inflammation. My eye is 95%, swallowing is 100%, right-hand ability is 90%, right tricep is back to about 50% of strength (better than 0%!), and the rest of my arms and legs are still at about 70% of strength. If I was to assign numbers to these sorts of things.

I haven’t collided again with the iceberg of pain since getting out of the hospital, but every once and awhile I spy part of the tip of it in the distance.

I wait in fear to see how my phone bill with all of the international roaming adds up. We had a few hours worth of calling during the “escape” stage of the trip, and that’s not going to be cheap.

And so we’re back to the “endure” stage. Our Victory Lap was premature, but we didn’t know that at the time. The next few months will be difficult, but it’s a difficult that we know. A difficult that is imperative.

There’s cancer in my brain. We have experts we trust that have advised us on a course of treatment. There’s no choice of “do we” or “don’t we”, only of how well we do it.

“Come on! Are you a cancer patient or a can’tcer patient?” Sorry.

I tried taking Percocet to soothe the pain, but that upset my stomach so much that I couldn’t keep it down! When we went to the Oncology Infusion Center on the Thursday prior to collection, they let me stick around after the blood tests so we could try and manage the pain. Dilaudid and laying in a bed seemed to help a little bit, and eventually it seemed like I might be ready to head home. Just before the elevator doors closed, Dr Norman’s RN called my name and wanted to chat. After talking to her for a minute or two the pain started up again, and with it came some serious nausea. And then I tasted my lunch again.

Back to bed! This time we started a glucosteroid (Dexamethasone) for possible head inflammation. That seemed to help in a big way. And so the next morning before heading to the apheresis I actually stopped by Group Health for blood tests and another dose of Dexamethasone. That calmed the pain again.

My hope was that stopping the Neupogen would make the headaches go away, but they’ve stuck around. All this week I’ve had a few different kinds of aches:

• top of my head, continuous pain like I bumped it on something
• front of my head between and above my eyes, seemingly sinus-related
• throbbing back of the head pain when I flex my abs or stand up quickly

It’s really not fun. It’s making me less inclined to be creative or concentrate on things. I weaned myself off of the Dexamethasone on Tuesday, but I’m considering giving it another try!

Oh, and I have hearing loss and a constant ringing sound on the right side of my head. I’m really hoping this is something that will heal! I remember having it start just before one of the intrathecal chemotherapy rounds, and Dr Norman noting that if it goes away because of the methotrexate we’ll know it’s lymphoma-related. It hasn’t gone away yet, which means it isn’t due to nervous system infiltration of the lymphoma. Good to know! Now that we’ve got that figured out, it’s safe for it to go ahead and get better. Right?

The first two days were a bit of a blur; I took the prescribed Ondansetron to make sure the nausea stayed manageable and some Dilaudid for some pain. Other than that, I don’t exactly remember what happened that day. Opiates: 1, Tom’s Memory: 0.

The day after makes more sense; there wasn’t any Dilaudid involved, but I remember aches and pains. And started to notice that things tasted weird. For the next week I would have the taste of metal in my mouth almost continuously. We picked up some lemon drops on the advice of the chemotherapy nurse; lemon drops cut through the metallic taste in saliva, providing a much-needed flavor break.

I had some pretty long-lasting indigestion, too. People described the few days after chemo as the worst hangover ever; I didn’t have noticeable nausea or headaches, but my body ached and my belly hurt. “Hangover” seems an apt description.

Another significant effect that I’ve noticed: peripheral neuropathy. I’m losing sensation in the tips of my fingers, courtesy of Vincristine. Apparently there is an 80% chance that I’ll recover from it.

Burning my mouth with hot liquids is another thing that I have to give up — I had some coffee and hot tea over the weekend, and my tongue is taking much longer than usual to heal.

In all, I think that the effects of the first round of chemo were not as bad as the warnings forecasted. I bounced back well, feeling a restored appetite by the third or fourth day, I think.

Let’s hope the next round goes as smoothly.

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!

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.”