On Tuesday I wrote to Dr Norman to describe the litany of symptoms that have been ailing me for the last few weeks; that evening he responded that he would have some extra time Wednesday morning before his first patient, and that I should come by to see him.
His suspicion was that my correlating digestive disfunction with the headaches was merely coincidence, and that the nature of the headaches indicated that the lumbar puncture sites hadn’t sealed up completely. A slow, tiny leak of spinal fluid can cause a decrease in pressure around the brain. The brain depends upon the spinal fluid pressure to stay in the right position. If the support is weakened there can be all kinds of pain, described as a post dural puncture headache. Since it had been constant for the last few weeks it seemed that it wasn’t intending to heal on its own. For some faster relief, Dr Norman called in some favors and assembled a team that could perform an epidural blood patch later that day.
But first, he scheduled another MRI just to make sure. He was “selling his soul” to arrange all of this stuff same-day, and I really appreciate it.
After the consultation with Dr Norman I went over to Audiology to get some data on the significance of my hearing loss. My left ear is pretty much unchanged from a month ago, but my right ear shows significant hearing loss in ranges above 2kHz. High-pitched noises don’t make it into my brain so well right now, and I’ve got a constant high-pitched whine coming from inside my head on that side. It’s like a stuck pixel on a monitor; the sensors that detect high-pitched sounds are stuck in the “on” position, so they don’t actually hear real sounds. I’ll be seeing someone again soon to learn about the chance that it could improve again. That would be nice.
Next was the MRI, which was just as (honestly) relaxing as I remember. My favorite scan noise sequence: “bzz bzz, bzz bzz, bzz bzz… click click click click click… bzz bzz, bzz bzz, bzz bzz… click click click click click click”. I think I want to write a song with that as the base, but maybe not with the MRI machine as the instrument.
MRI results were clean. Still have a brain, and nothing bad is hanging out in there.
After the MRI was the procedure for the blood patch. The doctor had me lay on my side and tuck my knees up toward my chest to give my back a good arc shape. He then injected some lidocaine to numb the needle’s path.
There were actually two procedures performed: the first was a normal lumbar puncture and collection of a CSF sample, just like I’ve had before (but with my laying on my side instead of sitting up). For the lumbar puncture, the needle passes through the epidural space and them through the tough layer of dura mater that surrounds the spine.
The second procedure has the needle actually stop in the epidural space; the same place that is used for delivering epidural anesthesia. In this case, once the needle was placed, a nurse placed an IV in my arm and drew about 5cc of blood. The blood was then injected into the epidural space, where it helped restore more normal pressure in the CSF and started patching any holes in the frequently-punctured dura mater.
After having me lay back for a few minutes I got up and walked out on my own two feet. There was already some relief to my headaches, and in the last day they’ve abated even more!
Now I’ve just got to make sure that these hints of Bell’s Palsy (big ear pain, slight facial motor impairment, facial twitching) don’t turn into a full-fledged episode. Prednisone and ice packs to the rescue. Cold packs have, this time, seemed like a helpful (and non-narcotic) way to relieve the ear/bone pain caused by facial nerve inflammation. It’s actually kinda addicting; Jana has had to make me take breaks, so I don’t just fall asleep laying on the towel-covered ice pack! And ice packs are tough to keep in the right position when you’re trying to sleep.
Bottom line: my headaches are 90% better. Winner!
Posted in: Treatment Phase | Tags: bells palsy, blood patch, dr norman, epidural blood patch, headaches, ice pack, lumbar puncture, pain, post dural puncture headache
The victory of the stem cell collection marked the end of needing to give myself the Neupogen shots each night, which is nice. But since then I’ve been dealing with a really annoying headache. Actually the headaches started during the week just before the collection; splitting headaches that couldn’t be extinguished laying down.
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?
Posted in: Treatment Phase | Tags: apheresis, dexamethasone, dilaudid, dr norman, filgrastim, glucosteroid, headache, hearing loss, intrathecal chemotherapy, methotrexate, neupogen, pain, percocet, tinnitus
To be ready to collect stem cells the CD34+ cell concentration in one’s blood is supposed to be above 8 * 10^6/ml. If the concentration is too low, collecting a viable transplant amount will take too many sessions. And at 4-5 hours a session, fewer is better!
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.
Posted in: Treatment Phase | Tags: apheresis, autologous stem cell transplant, blood transfusion, buffy coat, cd34+, central venous catheter, emla cream, group health, picc line, scca, stem cell collection, tegaderm, transfusion
I got a call earlier today from Dr Norman’s office saying that the third round of flow cytometry (the first since intrathecal treatment started) came back negative.
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!
Posted in: Treatment Phase | Tags: flow cytometry, intrathecal chemotherapy
Last Thursday I started the last lap around the R-CHOP track.
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.
Posted in: Treatment Phase | Tags: autologous stem cell transplant, cd34+, chemotherapy, dr norman, G-CSF, oncology infusion center, r-chop, scca
Continuing the story from last time, I was giving myself shots every night to build up my blood counts for the autologous stem cell transplant. I went to the SCCA and they gave my beefy veins the thumbs-up; I wouldn’t need an additional vein catheter to make this happen.
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.
Posted in: Treatment Phase | Tags: autologous stem cell transplant, bells palsy, cell differential count, central nervous system, dr norman, flow cytometry, intrathecal chemotherapy, lumbar puncture, methotrexate, scca
There’s a lot of catching up to do.
Things got real scary for a bit, then a lot less scary.
But the time for writing it all up is not now. It was going to be, but tonight’s Prednisone-insomnia is wearing off.
Hooray!
Posted in: Treatment Phase |