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?

Back on the 9th (a Monday) my CD34+ concentration was 1.01. My white blood cell count was nice and high though, so we made plans to give my blood until Thursday to recover from chemo. We’d test again with the intention to collect on Friday.

On Thursday I was at the threshold; my blood was ready to rock. Friday morning we went to the SCCA’s apheresis unit for a long day. They tested my CD34 concentration again: 40.32. More than ready. Ripe for the picking!

But first: EMLA cream! I applied it to the areas where I expected they might place the needles and it did a pretty good job of numbing the skin. If you ever use it, be sure to cover it with something like saran wrap or Tegaderm. And give it 30 minutes to an hour to soak in.

The process required placing two needles: one that would flow blood out of my body into the apheresis machine, and one that would flow back in. At any given time the machine has about a cup of blood in it, and during the 5 hours they cycled 6 times my body’s total blood supply through the filter.

The machine separates the blood into three different layers based upon weight: plasma, red blood cells, and the Buffy coat. The Buffy coat contains a bunch of different types of cells, one of which is the delicious pluripotential hemopoietic stem cells that we’re wanting to collect. Unfortunately, since the Buffy coat also has other types of cells, they don’t know how many HSCs have been collected in each batch until they run some tests after it has been collected. You don’t know if you’ll need to come back again until a couple hours after each day of collection.

My collection took a little longer than normal since they were using my veins instead of a central venous catheter or (“central line”). A central line can handle higher flow rates because it’s a tap into a large vein; arm veins aren’t as beefy. Still, mine let us go to about 80% of the norm for a central line. I was willing to endure the slightly longer collection in exchange for one fewer surgery. Well, two fewer; I would’ve had to have another surgery to remove it!

For a solidly viable transplant they want to collect at least 5 x 10^6/kg HSCs, which they say usually takes between 1 and 4 days. We finished up my collection, and Jana and I headed out for a quick dinner before returning to Group Health for our evening appointment. If I was going to need to return for another day of collection, I was told I should get a two-unit transfusion to boost my red blood cell and platelet counts. It would likely take a couple of hours, but I’d feel better from it.

We got to Group Health early and hung out in the waiting room with our cell phones nearby. The SCCA apheresis folks were to call us once they got word on how much we’d collected. We waited, waited, and waited some more. I eventually went to the desk and checked in; just as they were showing me to my room for the transfusion I got the call: we needed at least 5.0, we collected 9.6!

And that’s how we collected nearly double the necessary amount of HSCs in a single session without needing to place a central line.

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!