I’m happy to to be able to report that the chemothererapy (hyper-CVAD) that we launched is having the kind of effects we were hoping to see. Namely three things:

• My throat is incredibly sore
• I’m spiking short-term fevers left and right
• The cancer cells are going away!

They’ve been giving me just-about daily blood and platelet transfusions to replace the ones that I’m not able to self-sustain. If you’re eligible, please get out to the Puget Sound Blood Center or your own local blood bank. They are hungry little boys starving for those extra amounts you don’t need! And now I must rest.

We started the day by talking with Dr Norman about the schedule for the next few weeks, then went to the Oncology Infusion Center for blood tests. Then back to Dr Norman for more intrathecal chemotherapy. Then back to the Oncology Infusion Center for round six of six.

I’ve started up on the G-CSF shots again, plumping up my blood with stem cells so we can get back to preparing some autologous stem cell transplant ammunition. The side effects from the chemotherapy, combined with the side effects of not resting a ton after the recent lumbar puncture, have combined to be less-fun that usual. I’ve felt pain, then sickness from the pain pills. I’ve felt tired, and yet unable to sleep well at night. It’ll be nice to break this cycle!

After three days of the G-CSF shots, we’re starting up the daily blood count cycle. The first step is to watch for my white cell counts to be high enough, after which we’ll starting sending my blood to the SCCA for CD34+ counting.

And I just got the call that my white cells are already high enough. Blood is on its way. Let’s rock and roll.

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!

For instance, each chemo day I’ve progressively been less and less interested in the hospital food. Last time the smell of it made me sick. This time I won’t even let it in the room!

Each time me digestion seems to get messed up, but not always with the same severity.

And now I have Bell’s Palsy again, but this time on the left side of my face. This time I recognized the symptoms earlier, and started prednisone early. This time, hopefully, we’ll nip Old Man Temporary Paralysis in the bud!

Can you nip an “Old Man” in the bud?

Just as soon as my ability to whistle returned, it is gone again. I am going to whistle myself silly when I’m better.

My left nostril isn’t flaring much, and the left side of my mouth is refusing to smile. Eyebrows are still wiggly, but my left eye isn’t closing as well.

I hope to set some sort of recovery record this time, and then to never deal with this again!

Every once and awhile I feel pain near my ear similar to what I felt before the palsy started up, and I start to worry. So far, no regression.

I’m on the good part of the chemotherapy recovery period now, so other than being low on energy I feel great!

Last week my groove got messed up!

It started with a pain in and under my ear. A soreness that seemed to get better if I massaged it, but would eventually come back.

Then, on Friday evening, I looked in the mirror. My right eye was open more than my left. When I blinked, the right eye wouldn’t close as fast as the left.

My smile was also looking a little off-balance: like the right side of my mouth just didn’t have its heart in the game.

Over the weekend the ear pain increased, and so did the paralysis. Soon I couldn’t lift my right eyebrow, flare my right nostril, or move the right side of my lips at all.

The physicians read it as Bell’s Palsy. It’s thought that a viral infection caused the inflammation of one of the facial nerves (hence only one side of my face). The nerve lives within a hollow tube of bone, and the inflammation causes the nerve to expand so much that it damages itself by pressing against its constraints.

The prednisone from the chemotherapy reduces the inflammation, and I’m on medication that’s aimed at any possible infection. But until the nerve repairs itself, the right side of my face looks unflinchingly serene.

Like it’s taking the day/week(/month?) off.

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!

Which is good.

In fact, a few days ago (at the very end of the second round) I was feeling energetic and upbeat. Back to my old tricks!

Just in time for a follow-up visit with Dr Norman (blog post coming soon) and then the start of my third round of chemotherapy.

I’m writing this from an undisclosed location with comfy couches, salami sandwiches, and no sales tax. A chemo-retreat with some family. We’ve earned some relaxation!

Also, since I wasn’t in the same intense pain as last time when I started chemo, I’m not all hopped up on opiates today.

This means I’m fully awake and aware to notice the return of metal mouth. I haven’t had anything to eat yet, but my mouth already has a metallic taste.

Not to mention that my head and stomach feel hung-over. I already had a bit of that before I started sleeping for 10 hours though.

Another interesting point about today: my doctor felt that with how low my blood counts were before chemo, and with the expected drop due to the chemo, that I ought to have a round of colony stimulating factor treatments. These treatments use a genetically modified form of E-coli bacteria to deliver a message telling my bone marrow to ramp up neutrophil production.

Once a day for the next five days I’ll be filling up a syringe and injecting myself in my belly. This five days of treatment would have cost $1300 without insurance! With insurance: $34. And it’s got to stay refridgerated or it’ll go bad.

Now I will sip my coffee and hope it takes not of metal. Cheers!

Party hats, animal-themed sippy cups, delicious homemade cake, costume monacle and mustache. We’re doing chemo right!

Having a chest port is really convenient for all of this stuff. Must better (and more reliable) than tapping a vein each time.

Just about to bump the Rituxan to 150/hr. Vroom!