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!

I’m still getting dizzy spells, but not nearly as many. Our best guess is that the intrathecal chemotherapy has messed with my body’s autonomic nervous system response. When you stand up from sitting your body automatically (and nearly instantaneously) recognizes that if it doesn’t constrict blood vessels in your legs, gravity will pull blood away from your brain and into your legs. This constriction keeps your brain getting oxygen and keeps you from passing out.

We think that response is (occasionally) not working quite right for me. In fact, a few weeks ago I was at the hospital getting checked out for some really bad muscle aches when I had one of these episodes. I’d been sitting, eating some take-out (Shultzy’s, mmm) that Jana picked up while we waited for a prescription to be filled. I got up and walked to the sink to wash my hands. Just as I grabbed paper towels to dry, my brain gave a brief signal that “hey, I’m not getting enough blood up here!” Before I had time to react, I started to lose consciousness.

Fortunately for us, the doctor that we’d seen chose this exact moment to peek in and see if we needed anything else. He and Jana were both right at hand when I needed to be helped to the floor. I, myself, don’t actually remember anything between grabbing the paper towels and being on the floor with a pillow under my head, surrounded by at least four nurses plus the doctor. I was out for at least a minute. Totally unresponsive. Jana couldn’t tell if I was breathing or not. It was interesting to learn that one side of my body started responding before the other. I spent the night in the hospital with monitoring equipment, and naturally nothing else exciting happened.

That’s what the bit in the beginning about the “five weeks since hospital” being not so exact was referencing.

Since then I’ve occasionally had spells of dizziness, but none nearly so epic. Until today.

We went to meet my new Group Health oncologist, and during the initial vital signs check my BP clocked in at 84/6o-something. 84! After sitting down for awhile chatting with the doctor, the nurse had me move from my chair to the exam bed. I didn’t take the normal precautions of standing and waiting in place, opting to move right away to the bed. I sat down, a wave of light-headedness hit me, and I was out. Apparently my eyes rolled up in the back of my head and my breathing sounded really labored. My arms were shaking like I was frustrated at something, and I wasn’t responding verbally.

We gave the staff quite a scare! They hooked me up to some IV hydration for an hour, and nothing else exciting happened the rest of the visit.

We’re all thinking that my low BP was related to not doing a good job the previous day of staying hydrated. On the way home we grabbed a ton of soda and juices that I can drink along with water to redouble my hydration efforts.

The best guess of everyone, after scans and consultations and talking talking talking, is that the occasional autonomic nervous system lack of response is a toxicity from one or more of the treatments I’ve had. The most likely suspect is the intrathecal chemotherapy that we’re using to try and keep my CSF cancer-free. But even for the neuro-oncologist we’ve been seeing, this isn’t a side-effect he recognizes from other patients. And we don’t want to stop the therapy. But the question remains: will continuing it make this worse?

It’s stressful dealing with these dizzy spells, and its stressful to think about reducing the amount of therapy we do. Fortunately, my blood pressure can accomodate some stress right now.

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?

Dr Norman sounds convinced that the negative result is the one to run with; in his opinion we can stop the intrathecal therapy and stamp treatment as complete!

It feels a little strange to be finished with intrathecal so abruptly, and the threat to my brain was a lot to take in. I’ll be asking Dr Norman some clarifying questions about the state of things, and maybe even get a double-check on calling things “done.”

But we’re there. We made it, and we’ve bought tickets for our “victory lap” trip!

Bring on the bone pain, bring on the painkillers. Bring on the splitting headaches from the lumbar puncture we did prior to the MRI. Oh man, the headaches. Intense behind-the-eyeball pain that is dulled by powerful painkillers, or nearly eliminated entirely by simply lying down. Imagine if every headache could be relieved simply by laying horizontally. I think we’d live in a much more peaceful world.

As I was saying: “bring it on” — I’ll make it though the week or so and then it’ll be smooth sailing.

Then a call comes in on Thursday: I can stop taking the shots for now. One of the tests from last week’s lumbar puncture was abnormal. Abnormal how? Showing-lymphoma abnormal. Dr Norman wants to meet with me to discuss this tomorrow and start intrathecal chemotherapy immediately.

Bam! We’re right back into the scariest part of this whole process: when you know something is wrong, you have a name for it, but you don’t know the full extent of what you’re facing. So Thursday night we know that there’s sign of lymphoma in my nervous system, and that this is bad news.

We meet with the doctor and he explains the situation: of the two tests that could indicate lymphoma in my nervous system, one was abnormal and one was normal. The test that was normal (cell differential count) was the one that would have indicated relative quantities of cells in the spinal fluid; in the case of well-established central nervous system disease, this would have been abnormal. The test that was abnormal (flow cytometry) identifies the characteristics of cells that are present, but doesn’t provide data on their distribution.

While both tests didn’t overwhelmingly indicate lymphoma, he strongly advised that we take the flow cytometry result seriously and begin treatment as if the result was definitive. If there’s even a little bit of lymphoma, we should knock it out before it spreads.

Dr Norman drew more fluid before administering my first intrathecal chemotherapy. The process was pretty similar to my first lumbar puncture, but my anxiety was less on the procedure and more on the idea that there was cancer in my brain. Ugh.

We spent the weekend relaxing with family down near Portland, and I think laying low helped. There weren’t any headaches from the puncture and no noticeable side effects from the intrathecal chemotherapy. Thank goodness!

The plan was for the next intrathecal chemotherapy to be administered a week after the first, but Dr Norman wanted to see the results of the same tests on the new sample of spinal fluid. I kept checking during the week, and got the word on (I think) Thursday: both tests came back negative for lymphoma. Both tests were perfectly normal!

Instead of doing six rounds of intrathecal methotrexate, we’re going to do the same three rounds that he originally proposed as a risk-reducing measure. The conflicting results aren’t something that he can explain; he’s a bit baffled by them. One possibility is that my body’s response to the infection that caused the Bell’s Palsy included clonal cells that identified in the flow cytometry as lymphoma. In the week between the two rounds of testing the response could have abated and stopped influencing the result.

It sounds good in my mind, so that’s what I’m going with for now.

Lymph nodes all over my body that were enlarged and opaque had returned to normal-sized translucency. My spleen has shrunk from enlarged-size to much closer to normal. Observe!

Spleen as seen in mid-June

Spleen as seen at the end of August

From what Dr Norman sees in the CT scan, he thinks that there is “a lot, lot less cancer. Practically nothing, if not nothing left.” If there had never been any splenic involvement, he’d call this a “complete response” — we can see through the lymph nodes and there is no sign of cancer left.

But since the spleen is opaque (even when healthy), and since we don’t know the exact size of my particular spleen when it isn’t chock-full of cancer, we need more data before we can say that it’s cancer-free. If we do more scanning after further treatments and find that the spleen hasn’t shrunk any further, we may be able to retroactively call this a “complete response after two treatments.”

The speed of this response is very encouraging; both cancers have been swatted down to nearly-untraceable levels. Just as with antibiotic treatment, you don’t stop when the infection appears to be gone.

We want it to go away, and we want to break its ability to come back. From Dr Norman’s interpretation of my response to treatment, this is a real possibility.

There’s still plenty of work to go:

• I may have developed some lactose-intolerance. Still investigating.
• Extra hot/cold sensitivity has shown up around some teeth, and I’m going to get it checked out by my dentist.
• One of the lymphomas may have spun off a diffuse large b-cell colony, which makes prophylactic intrathecal chemotherapy a (slightly frightening) consideration.

But even with all of that ahead, the (possibly) complete response after one-third of the treatment plan is a very encouraging sign. It’s good to get good news again!