The nurse prepared me by giving me really large amounts of Benadryl and Zofran to try and keep me from getting nauseated during the actual process. The preservative that the stem cells “chill” with can make people’s bodies do weird stuff.

During the actual infusion I felt a scratchiness in my mouth and throat around where some of the lining has been weak. It really hurt! I’m glad that I collected quickly in the beginning, and so didn’t have as many bags to retake.

Want to know how the cryopreservation works? You see, when water gets really cold it crystallizes (i.e. ice). Our cells are full of water. Deep-freeze ‘em and they get all broken.

DMSO, however, doesn’t crystallize at the same temperature. Collected stem cells are bathed in DMSO as they’re frozen. As the temp drops, the cells suck in some of the DMSO and spit out some of their water. And this is how cryopreservation works.

You can put this blog post in your CV if you want to start looking for jobs.

The pain from earlier today is gone, and the cells are delivered. All that is left is for them to activate and take their places.

The side effects of the Cytoxan, and at this high of a dose, have been memorable. Diahrrea. Vomiting. Simultaneously. At least four episodes in the middle of the night. My mouth started getting sore, and I’ve just felt all-around miserable!

But now a bunch of hours have passed, and so has the vomiting. Things are more bearable.

Tomorrow is “day zero”: when I get back the stem cells we collected in November. I wonder if I’ll still recognize them! The event itself won’t be fancy (or a ceremony), but it marks the end of us trying to damage my body on-purpose. And that sounds like a day worth marking.

Also, Jana brought me a stuffed robot that I love and have to share with you all. His name is “Ondansetron”…

This time I wanted to do everything I could to avoid suffering through the joint pain on Saturday morning. My lizard brain considered trying to stay in the hospital a few extra days (or checking into Extended Observation) to be somewhere that had IV pain medication available.

My rational brain said this was silly. Checking into an expensive room for a night to avoid a few hours of pain seemed excessive. And my rational brain won, as it often does.

Besides, the pain showed up a day early. Friday morning my knees and ankles hurt like the dickens for a few hours. Engage opiates! And ibuprofen! I got up and read stuff for a few hours, and eventually (after an hour or two) the pain subsided enough for me to go back to sleep.

I did the same thing on Saturday, and on Sunday. That would’ve been a lot of days in the hospital!

I’m glad that’s done with.

Next we scheduled an appointment with a transplant specialist doctor at the SCCA to see what she recommended as the next step. Apparently the speed with which the lymphoma asserted itself in my CNS suggests that we ought to do a stem-cell transplant.

My case was discussed by a bunch of well-regarded doctors at the SCCA, and the consensus was that I ought to do an autologous stem-cell transplant.

This is a biblical-flood sort of treatment. When we collected the blood stem-cells back in November, that was us preparing am ark. Now we’ll irradiate my entire body and fill it with a crazy amount of chemo, in a stage known as “conditioning”. This will hopefully kill off any remaining individual lymphoma cells. Unfortunately it also kills offy bone marrow (and along with it, my body’s ability to produce new blood cells).

A few days later they give back my collected stem cells and my body starts to rebuild. The stem cells find their way to my bones and start producing the cells that make up bone marrow.

As part of this, I think I’ll lose a lot of the immunities my body has built up over the year. We’re really hitting the reset button!

There’s one additional question to be answered: there wasn’t a solid consensus among the SCCA doctors on whether or not to recommend extra radiation focused on my brain and spine. Lymphoma in the brain can be sneaky (as we’ve found), and am aggressive approach is more likely to get it all.

This can, however, cause damage to healthy brain tissue. Possible decreases in memory strength, among other undesireable things.

I need to decide soon, but I’m leaning toward going for it. The goal of a treatment like this is a cure, and I want to do everything I can to get there.

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!