I’m being disingenuous. When he would say “good news, everyone” it was always followed by bad news for everyone. Everyone but him. Me, on the other hand, I have actual good news!

There is no detectable evidence of lymphoma in my body. I had a PET/CT recently that checked everything between my neck and my knees, and the flow cytometry on my last sample of CSF came back clean. Booyah.

Also, I forgot to mention in my last post that I’ve been seeing an opthamologist who was noticing that the pressure behind my eyes were elevated. After confirming last week that my CSF pressure was elevated, the opthamologist and my neurologist agreed that I should start taking a diuretic that would reduce the fluid pressure on my optic nerve. I have a follow-up visit in a few days, but I’m pretty sure we’re going to find that it’s working. The double-vision that I’ve been experiencing off-and-on seems to have disappeared completely since we’ve started this stuff.

I am so incredibly happy to see that symptom go away.

Also worthy of note: I haven’t had a dizzy spell in a week and a half. I wonder if those were related to CSF pressure too. Either way, I’m not questioning it! We were worried that the intrathecal chemotherapy sessions were making the dizzy spells progressively worse, but the most recent dose didn’t seem to cause any increase at all. I’m really glad to break that cycle.

I’ve still got monster amounts of fatigue, but it is incredibly encouraging to see two of my more debilitating symptoms get knocked out in the same two-week period.

One thing that was quickly clarified: we had in mind that the heart of the process would take 90 days. Bzzt! Wrong! That’s for allogeneic transplants, where the donor and the recipient are not the same person. Fortunately, that’s not what I’m doing. The type of transplant we’re starting up should take more like 30 days. Some take less, some take more.

It sounds like everyone is actually pretty sure that the extra radiation of my brain is a good idea. We’ll be meeting with a neuro-oncologist on Friday to check out the results of tomorrow’s MRI.

In the last week I’ve: had a physical, recounted my entire lymphoma history, declined to participate in some studies, had some blood drawn, and had my teeth examined. Coming soon: MRI, MRSA check, PET/CT, bone marrow aspiration and biopsy, and pulmonary function tests. Some of these are to make sure that the cancer is in remission, and some are to make sure I can handle the transplant conditioning.

And yesterday reminded me that when I say “the cancer is” I actually mean “both cancers are”. I met with the attending doctor for my team and he noted that stem cell transplants have been found to be curative for more aggressive cancers (like the one that was found in my nervous system), but that the slower-moving (indolent) one may still (just barely) survive.

On the plus side, indolent cancers don’t seem to develop resistance to treatment as quickly. And if they do get resistant to specific attacks, there is still a broad spectrum of treatment options. And more on the horizon.

For now it is important that the radiation and that transplant totally destroy the aggressive lymphoma. All energy toward that goal.

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 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.

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

It like it. Plus it means I would be under general anesthetic instead of the creepy-sounding conscious anesthetics. Woo!

We drove to the Group Health Bellevue Medical Center nice and early; we didn’t want to risk missing the appointment for this test, since it seemed so tough to get scheduled.

Apparently the street address for the facility is so new that online mapping services provide a route that is completely wrong, but with 100% confidence.

Being the adaptable folks we are, we were able to locate the correct location for the location to which we wanted to locate ourselves.

After checking in I was lead down to a mobile scanning truck that housed the $1.1M PET scan machine. They don’t have enough people needing PET scans to buy one for each facility, so they just bought one and cart it around between two facilities.

The technician, Tim, started by briefing me on the process. Next, we moved to one end of the mobile unit where he gave me an IV injection of a radioactive sugar after testing my blood sugar level. Once the sugar was delivered, I was to sit as still as possible for 30 minutes. No reading books allowed, as the repetitive motion of turning the page would draw more of the sugar to my hands.

You see, the preparation for this test is to fast for 6 hours prior. They want your blood sugar to get low. They want the cells in your body to be ravenously hungry. When the radioactive sugar is injected, your cells start to fight over it. Cancer cells, metabolically super-active as they are, tend to grab the sugar more than other cells. The radioactivity is then concentrated in the cancerous areas.

The next step was to lay down on a table that moved back and forth through the toroidal machine that was actually a hybrid CAT/PET scanner. They start by doing a CAT scan of the entire body to get a physical model of the body, and then do the PET scan to get an image of where the radioactivity is concentrated. Put them together and you have a 3D physical map of the body with shiny spots that might be cancerous.

Slick.

We celebrated the completion of the scan by grabbing food and heading south to spend a relaxing weekend with family for the 4th.

We’ll talk to Dr Norman on Monday to see the scan images and get our next steps.

He says the evidence is pointing strongly toward lymphoplasmacytic lymphoma. It’s not an aggressive cancer, which is nice. But that very trait also makes it recurrent. You can treat it, most of it will go away, but it will eventually come back again and again.

It sounds like the evidence isn’t totally conclusive yet, though. He’d like to get a tissue sample from an affected lymph node, and so far the only ones we know of are in my abdomen. We’re going to do a PET scan to see if we can find any more accessible ones to remove and dissect. That PET scan isn’t until the beginning of July.

This is starting to take a long time!