The specific conditioning that has been recommended is TBI along with Etoposide and Cyclophosphamide. For those of you keeping score at home Cyclophosphamide was part of the R-CHOP dream team, known otherwise as Cytoxan. Take a second to go read the “TBI” link. It’s short.

Welcome back! They’re planning to hit me with 12 Gy of radiation which, as you read, is more than twice a dose that is fatal in most people (without aggressive medical attention). That’s what my stem cell collection was all about. My stem cells are “aggressive medical attention”. “Patient, heal thyself!”

One of the biggest side effects of all this toxic stuff is mouth sores. When people say that most chemo and radiation attack fast-dividing cells, what they really mean is that it kills all cells that are in the process of dividing. It just happens to be that most cancer cells are more likely than lots of others to be dividing at the time. For my transplant I’ll be armed with a (relatively) recently developed drug named Palifermin, that builds up extra mouth and stomach lining ahead of time. My intent is to handle this all like a champ, and skip the mouth soreness.

On to the dilemma mentioned in the title of this post: the extra head radiation! We met with a radiation oncologist on Thursday that we liked, and she described the kind of program she would recommend: 32 or 48 Gy to my head (including the TBI dose of 12 Gy). She mentioned, however, that there aren’t really data or studies that describe the efficacy or specific side effects of cases like mine. We liked her, felt like we could trust her, and appreciated her making clear that her recommendation was largely based on her own experience and observation.

On Friday we met with a neuro-oncologist who disagreed. In his opinion, the appearance of lymphoma in my CSF didn’t represent a relapse. He feels that the disease was there all along, and that the three doses of methotrexate that we did as a prophylaxis was not enough to clear it out. He agrees that we ought to go ahead with the planned conditioning and transplant, but would add six doses of monthly DepoCyt to continue cleaning my head out. He thinks the cognitive risks of the extra head radiation are unnecessary at this point.

The intuition of Jana and I high-fives Dr Chamberlain and Dr Taylor, the two neuro-oncologists that have looked at my case, when they say they’re not comfortable calling this a “relapse” in my CNS. It would be good to hear what things were considered when the big conference at the SCCA considered my case a few weeks ago. Part of me wonders if they put too much faith in the LP and MRI results. Dr Chamberlain described each test as having a pretty high rate of not detecting small amounts of disease. For an LP to catch it the lymphoma needs to be mobile enough that it would be included in the sample of CSF taken. For the MRI to find it, the disease needs to have some bulk. Microscopic amounts of disease are tougher to see at that level of detail.

And so now we’re faced with the choice of whether or not to go for the radiation. It feels like skipping it is going with our gut, but I don’t want to later regret not being as aggressive as possible. I also don’t want to later regret opening myself to the risk of some sort of brain damage.

And I need to decide soon.

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.

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!