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.

“CONCLUSION: Primary chemotherapy based on high-dose MTX and ARA-C is highly efficient in PCNSL. Response rate and response duration in this series are comparable to the response rates and durations reported after combined radiotherapy and chemotherapy. Neurotoxicity was infrequent.”
(http://www.ncbi.nlm.nih.gov/pubmed/14597744?dopt=Abstract)

Two things: first, HD-MTX + Ara-C was what I did back in the beginning of the year. Woo! Second, PCNSL is lymphoma that originates in the brain. It is much more scary of a situation than mine.

And our attending doctor, after reviewing my case some more, agrees with the opinion that this isn’t a CNS relapse. This is good news! A relapse of lymphoma in the CNS, especially this soon, would be a sign of a particularly tenacious (and difficult to kill) lymphoma.

It is looking like I’ll not want to get the boost (but still get the conditioning TBI). I’ll sleep on it to make sure.

The specific conditioning that has been recommended is TBI along with Etoposide and Cyclophosphamide. For those of you keeping score at home Cyclophosphamide was part of the R-CHOP dream team, known otherwise as Cytoxan. Take a second to go read the “TBI” link. It’s short.

Welcome back! They’re planning to hit me with 12 Gy of radiation which, as you read, is more than twice a dose that is fatal in most people (without aggressive medical attention). That’s what my stem cell collection was all about. My stem cells are “aggressive medical attention”. “Patient, heal thyself!”

One of the biggest side effects of all this toxic stuff is mouth sores. When people say that most chemo and radiation attack fast-dividing cells, what they really mean is that it kills all cells that are in the process of dividing. It just happens to be that most cancer cells are more likely than lots of others to be dividing at the time. For my transplant I’ll be armed with a (relatively) recently developed drug named Palifermin, that builds up extra mouth and stomach lining ahead of time. My intent is to handle this all like a champ, and skip the mouth soreness.

On to the dilemma mentioned in the title of this post: the extra head radiation! We met with a radiation oncologist on Thursday that we liked, and she described the kind of program she would recommend: 32 or 48 Gy to my head (including the TBI dose of 12 Gy). She mentioned, however, that there aren’t really data or studies that describe the efficacy or specific side effects of cases like mine. We liked her, felt like we could trust her, and appreciated her making clear that her recommendation was largely based on her own experience and observation.

On Friday we met with a neuro-oncologist who disagreed. In his opinion, the appearance of lymphoma in my CSF didn’t represent a relapse. He feels that the disease was there all along, and that the three doses of methotrexate that we did as a prophylaxis was not enough to clear it out. He agrees that we ought to go ahead with the planned conditioning and transplant, but would add six doses of monthly DepoCyt to continue cleaning my head out. He thinks the cognitive risks of the extra head radiation are unnecessary at this point.

The intuition of Jana and I high-fives Dr Chamberlain and Dr Taylor, the two neuro-oncologists that have looked at my case, when they say they’re not comfortable calling this a “relapse” in my CNS. It would be good to hear what things were considered when the big conference at the SCCA considered my case a few weeks ago. Part of me wonders if they put too much faith in the LP and MRI results. Dr Chamberlain described each test as having a pretty high rate of not detecting small amounts of disease. For an LP to catch it the lymphoma needs to be mobile enough that it would be included in the sample of CSF taken. For the MRI to find it, the disease needs to have some bulk. Microscopic amounts of disease are tougher to see at that level of detail.

And so now we’re faced with the choice of whether or not to go for the radiation. It feels like skipping it is going with our gut, but I don’t want to later regret not being as aggressive as possible. I also don’t want to later regret opening myself to the risk of some sort of brain damage.

And I need to decide soon.

One thing that was quickly clarified: we had in mind that the heart of the process would take 90 days. Bzzt! Wrong! That’s for allogeneic transplants, where the donor and the recipient are not the same person. Fortunately, that’s not what I’m doing. The type of transplant we’re starting up should take more like 30 days. Some take less, some take more.

It sounds like everyone is actually pretty sure that the extra radiation of my brain is a good idea. We’ll be meeting with a neuro-oncologist on Friday to check out the results of tomorrow’s MRI.

In the last week I’ve: had a physical, recounted my entire lymphoma history, declined to participate in some studies, had some blood drawn, and had my teeth examined. Coming soon: MRI, MRSA check, PET/CT, bone marrow aspiration and biopsy, and pulmonary function tests. Some of these are to make sure that the cancer is in remission, and some are to make sure I can handle the transplant conditioning.

And yesterday reminded me that when I say “the cancer is” I actually mean “both cancers are”. I met with the attending doctor for my team and he noted that stem cell transplants have been found to be curative for more aggressive cancers (like the one that was found in my nervous system), but that the slower-moving (indolent) one may still (just barely) survive.

On the plus side, indolent cancers don’t seem to develop resistance to treatment as quickly. And if they do get resistant to specific attacks, there is still a broad spectrum of treatment options. And more on the horizon.

For now it is important that the radiation and that transplant totally destroy the aggressive lymphoma. All energy toward that goal.

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.

I awoke to intense pain in all of the joints in my legs. Terrible pain like they were broken. But they weren’t; they all moved fine. And thank goodness this was pain that could be pierced by Percocet!

After the second high-dose methotrexate, Saturday morning arrived and the exact same pain returned. The night before saw a walk through the grocery store, but not much more. This time we visited Urgent Care to make sure that nothing was actually going terribly wrong.

X-rays and blood tests looked good. It sounds like arthralgia (like arthritis without the inflammation) can be an occassional side effect of the treatment.

Next time I’ll take Friday night off entirely and see if that changes things.

Getting out of the hospital after that second treatment was a bit stressful. They prescribed that I was to take 25mg of Leucovorin (the Methotrexate antidote) every 6 hours, for nine doses. We checked at the hospital’s pharmacy: out of stock. Group Health? Out of stock, unless we wanted to drive to Tacoma! My dad got on the phone and started calling pharmacies; he found one near our house that had it. The only problem was that they only had it in 5mg tablets! So I got to take 5 pills every 6 hours. It was just a shock that they were discharging my from the hospital without first knowing that I would actually be able to buy my rescue dose.

Also! I had an MRI of my head performed on Wednesday, and Dr Norman has communicated that it looms great. The lymphoma appears to be responding well to the treatment.

In a few weeks we’ll be meeting with a doctor at the SCCA that specializes in transplants to gather a recommendation on next steps after treatment. These lymphomas have shown themselves to be tricky, and it might take a stem-cell transplant to get me a chance of a long-term remission (or even cure).

I was to get my next dose of DepoCyt delivered intrathecally on Friday, but we had to postpone it as I forgot to start the pre-medication (Dexamethasone) on Thursday. For some reason I had started thinking that the Dex was pre-medication for the methotrexate. It turns out that administering DepoCyt without the pre-medication can cause seizures (among other unpleasant side-effects). I’ve started the Dex now and we’ll roll the treatment into the rest of the party on Monday.

Tomorrow we start round three.

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.

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.

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.

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!