They were able to extubate (take him off the ventilator) a few days ago, and he’s been doing just fine with a little oxygen from a nasal cannula. He started speaking the moment they took the tube out: “We need to have a discussion. I need to come to an understanding. Why have you been withholding ice cream?” It seems his first recollections of the previous 8 days were just a vague awareness that he was trying to ask for ice cream and we were ignoring him. He has later mentioned feeling some terror, and suspecting we were trying to kill him… and how grateful he was to get oriented and discover the opposite was true. I don’t think he remembers the tube itself, or the circumstances that led him to critical care in the first place. Fine by me if he never does…

Tom also instantly started expressing how grateful he was for the support from everyone when he heard how much he’s been through. That’s him alright; facing a scary medical situation and finding cause to be thankful. Over the past few days I’ve been filling him in on all that’s happened, and it’s understandingly a bit overwhelming right now. He is touched by the messages people have shared and the reports of prayers and bone marrow donation registrations in his honor. He’s also had a stream of visitors that leave him happy (and sleepy).

The first round of chemo has finished and neutropenia is here. No fevers, and everything remains in balance. He has some pain from the high volume flushing going on (getting rid of chemo toxins and edema from the cancer), and has been given a dilaudid drip with doses he controls. The nurses are falling in love with him and check in even when they’re not assigned to him. He has started eating (first order: chocolate ice cream; second order: root beer), sitting up in bed, and flexing some muscles. They’ll start neupogen shots tomorrow, which will speed up the arrival of his blessed little neutrophils and shorten this dark and dangerous watch.

I will be so happy to hand over the blog reigns and allow Tom to wax more eloquently than me. He is squeezing a little stress-ball to get his typing dexterity back ASAP. I sincerely hope you’ll be hearing from him next, and soon. Thank you all again for your support through this unimaginably difficult time. It’s hard to accept that our fight has just begun, considering how much we’ve been through so far, but after all this looms his transplant… at least we’ve learned that Tom’s tenacity is not to be underestimated!

The biopsy from back on my birthday shows significant infiltration of the bone marrow by the more aggressive of the two lymphomas that I had before. This pretty solidly explains why my blood counts have been so low; there isn’t any room for the bone marrow stem cells to operate properly. In fact, the pathologist reported that it was difficult to spot any stem cells in the sample at all!

My spleen is bigger, but not as big as last time. Some lymph nodes are bigger, but not as large or as widespread as last time.

In addition, there may be some water around my heart. I’ll be getting that checked out further to see how that will impact treatment.

Today is my day off from medical stuff. Tomorrow, a transfusion and an LP to make sure it hasn’t spread back into my brain. The next day: into the hospital for heavy duty chemo.

And when this new type of chemo wipes it away, I’ll probably be getting another stem-cell transplant. The scarier type this time.

But recently I’ve started to have very little saliva most of the time. This had been accompanied by the also-not-mouthwatering red dots I was getting on my feet and legs, and the recurring strong pain I would get in my left ankle.

Last week I called my normal doctor and got an appointment for Thursday. On Wednesday I had my normal post-treatment 3-month blood tests. Normally I just an email notification when the results are available. I got a phone call instead. It was from the on-call Urgent Care doctor.

He’d seen my blood test results and said that I needed to hurry to an urgent care clinic to get a platelet transfusion. And to not get cut along the way. Apparently platelet counts are supposed to be at least ~120k per mm3 of blood. Mine were 5k.

That night I had a transfusion. The next day my normal doctor appointment was overridden by Dr Oncologist, who needed to perform a bone marrow biopsy. Then on Friday I got more blood. I was given Saturday off, went in Sunday for more tests, and now on Monday I am back getting more platelets.

Something is causing my blood to be real deficient, but we don’t have any data on what it is just yet. Hopefully we’ll have those bone marrow results soon!

If you’ve got a spare five minutes, I highly recommend it!

We celebrated Mother’s Day with my mother-in-law a week late. We drove up north and took her out to a fancy dinner. During dinner, while just sitting and eating my food, I passed out. No standing up. No walking. Just steakin’. And it happened twice! One minute I’m getting about three-quarters of the way through my steak, and the next minute it’s gone! (They’d taken it to box it up for me to take home).

It happened again on the ride home, so we went in to Urgent Care to get me checked out. My heart was fine, and my blood counts were A-OK. The doctor on duty decided I ought to start an anti-seizure medication, Keppra, to see if it helps.

Well, since then I’ve noticed a marked decrease in the number of spells that I’ve had. I just had intrathecal chemotherapy again today, so we’ll see if that brings them back or not. I’ve been seeing a neurologist that doesn’t buy into the theory that the anti-seizure medications are the cause of the freedom-from-passing-out.

Also! A few weeks ago I had a fever that got as high as 103.1. Once again, we went into Urgent Care so they could test if I was fighting an infection. All of the cultures they did came back negative, which seemed good! But then we heard from my oncologist’s team that they wanted to run a PET scan to see if the fever was a sign that my lymphoma was back! We’ve got that scheduled for a week or two from now. Fortunately, last week the fever disappeared entirely. Gone. I’m pretty sure if the cancer was back, and was causing the fever, it wouldn’t have gone away on its own. And that makes me feel better.

Right around the time that I was dealing with the fever I was hit with a giant helping of fatigue. I could sleep from midnight until 11am, wake up long enough to eat something and take my pills, and then nap until evening. I didn’t have the energy to do much of anything, and it made me grumpy. And being grumpy made me even grumpier! But that’s all starting to pass, too.

Now, with a short nap, I can be a pretty good citizen of the world for most of the day.

Status report: dizzy spells are just about all gone, fever is toast, and fatigue is improving.

Success!

The last few days have eliminated that fright.

In the hospital, and early this week, I was noticing that I had trouble reading things from certain distances. I bumped the resolution on my monitor so things would be larger, and they were still fuzzy unless I was up close. My mom brought along a pair of cheap reading glasses and those helped clear things up.

Now I don’t need them anymore. They make things fuzzier. I still haven’t changed my monitor’s resolution back, but I can read the screen again. Victory!

My feet and legs still do the strange thing where they like to tense up. I feel like it’s been improving, but it’s still around. It will be easier to mark progress when it disappears entirely.

In the hospital, near the middle of my stay, I was able to write and commit some code on an open-source authentication module for the Kohana framework. Shortly after that, I lost the concentration to continue doing programming work (or much anything else) on the computer. This week, I’ve been building the amount of code I write each day; some of it even contributing to work projects. That’s right, I’ve even been doing work on my first week home. Victory again!

My conclusion is that most of my recovery requires having left the hospital. I don’t know how much of this progress I would have made so soon if I hadn’t been so adamant about getting discharged on Sunday.

My energy level is still low, but I set a few records on some of the Wii Fit balance games today. More victory! A little bit more exercise every day should build how far I can walk. The only annoying thing right now is that I banged up my toe nail (large one on the left foot) while I was in the hospital. It’s been getting wrapped up with gauze and antibiotic ointment, and barely fits in a sock. Definitely not in a shoe. So any walking that I’ve been doing has been in socks and sandals, the size of which make walking more like shuffling. Once my toenail figures out if it’s staying or going, my walking distance should greatly improve.

Also very important: I have been sleeping so much better at home than I was in the hospital. In the hospital I would be lucky to get an hour or two at a time, and then lay awake for an hour or two. Here I’ve been able to go three or four hours before waking up for a position change. It can’t hurt that there isn’t someone coming in approximately every four hours to check my blood pressure and temperature. Sleeping in my own bed, with my own charming wife, has made a drastic and victorious improvement in my sleeping habits.

Conclusion: being home is wonderful. Hospitals are helpful with their high-level of attention and care, but the independence of home lets you really start to heal.

What’s left is getting me eating again. During the worst of it all we switched me over to getting my nutrients through an IV bag. My stomach forgot how to eat during that time, so I need to retrain it. And we need to show that I can survive without the feed bag.

It sounds like they earliest they could be convinced of this is Sunday, so that is what I’m aiming for.

I just got a note in the main saying that my normal oncologist, Dr Kurt Norman, has left the practice where we were seeing him. We had a great rapport, and I am sad to hear him leave. Hopefully for better opportunities.

My current project is teaching my body how to eat and drink on its own again, which is tough. Some drinks go down my throat well, but are too acidic for my stomach to handle yet. Cranapple, I’m looking at you.

Slowly we try water, we try juices, brothes, jellos, and eventually move into soft foods like potatoes and shakes.

A few days back I shared my WBC numbers from when they came in at 130k. The next day they were at 300k. Then 660k. Today 1,010k. Build-em-up!

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.

A few major components of our immune system are known as B-cells and T-cells. They attack invading viruses and bacteria in different ways. Those ways are real interesting, but out of the scope of this discussion. Moving on!

My lymphoma, technically my lymphomas, affect different types of these B-cells. Not just are B-cells different from T-cells, but B-cells are different than other B-cells based upon where in the immune system they’re sourced.

These, and most cells in our body, have a series of systems that regulate when they’re approved to duplicate themselves. For example, while a cell starts duplicating it’s genetic blueprint, it runs a check on its DNA to make sure there aren’t errors in it. If it’s clean, it proceeds to clone its DNA. Next it tests the clone to make sure it’s A-OK. If everything is fine, the cell starts to grown and then split in half (leaving one copy of the DNA in each cell).

These regulatory processes help our immune system cells duplicate just the right amount of themselves to keep the right sort of population count.

But what happens if the gene responsible for running that check gets damaged? A cell that has developed flaw in its DNA will be able to duplicate itself unchecked!

And that’s how things gets started. One cell gets DNA damage in just the right way that it stops recognizing that its damaged, and turns into 2 of them. Those 2 become 4 become 8 become 16. Ad infinitum. Or at least ad chemotherapum.

As I was saying earlier, B-cells are all different from one another. Even the B-cells that came from the same area will have slight differences from one another. Like tiny immunosnowflakes.

If you grab a whole handful of B-cells, or a whole lymph node full, and you find a bunch of B-cells that are exact duplicates of one another, something is wrong with the reproductive regulatory gene in that line. You’ve found lymphoma!

If you grab a lymph node full and find two different sets of B-cells that are exactly alike, then you want to dig deeper. Run some tests. Some flow cytometry. My hospital ran these tests, then ran more tests, then sent off the material to the UW research department to dig even deeper.

In my case, the two sets (or colonies) of B-cells were genetically different. Two lymphomas!

By studying what different signals these cells are sending out and receiving, what kinds of other things these cells are looking to bond with, hematopathologists can start to classify where in the immune system these B-cells originated. And with this, get some idea of how they’ll behave once they’re cancerous.

The current speculation is that I have one line of Follicular lymphoma, and one line of Marginal Zone lymphoma. Both of them aren’t particularly aggressive, but that also means that it might be tough to destroy them completely. The more aggressively cells reproduce, the easier it is to chemotherapy their heads off.