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	<title>Lymphomartini &#187; methotrexate</title>
	<atom:link href="http://health.tommusic.net/tag/methotrexate/feed/" rel="self" type="application/rss+xml" />
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	<description>Two parts vodka, one part vermouth, and a splash of blood cancer.</description>
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		<title>Dilemma!</title>
		<link>http://health.tommusic.net/2010/03/dilemma/</link>
		<comments>http://health.tommusic.net/2010/03/dilemma/#comments</comments>
		<pubDate>Mon, 08 Mar 2010 03:02:31 +0000</pubDate>
		<dc:creator>Tom</dc:creator>
				<category><![CDATA[Treatment Phase]]></category>
		<category><![CDATA[autologous stem cell transplant]]></category>
		<category><![CDATA[cerebrospinal fluid]]></category>
		<category><![CDATA[conditioning]]></category>
		<category><![CDATA[cranial radiation]]></category>
		<category><![CDATA[csf]]></category>
		<category><![CDATA[cyclophosphamide]]></category>
		<category><![CDATA[cytoxan]]></category>
		<category><![CDATA[dr chamberlain]]></category>
		<category><![CDATA[dr kane]]></category>
		<category><![CDATA[dr taylor]]></category>
		<category><![CDATA[etoposide]]></category>
		<category><![CDATA[lumbar puncture]]></category>
		<category><![CDATA[methotrexate]]></category>
		<category><![CDATA[microscopic disease]]></category>
		<category><![CDATA[mri]]></category>
		<category><![CDATA[neuro-oncologist]]></category>
		<category><![CDATA[palifermin]]></category>
		<category><![CDATA[tbi]]></category>
		<category><![CDATA[total-body irradiation]]></category>

		<guid isPermaLink="false">http://health.tommusic.net/?p=203</guid>
		<description><![CDATA[We&#8217;re getting closer and closer to starting the stem-cell transplant conditioning. Last week we did an LP and an MRI to make sure my CSF was A-OK. Tests were negative, which is a positive sign. Opposite Day in a hospital would be hilarious. More on the tests, and their reliability, later. The specific conditioning that [...]]]></description>
			<content:encoded><![CDATA[<p>We&#8217;re getting closer and closer to starting the <a href="http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transplantation#Myeloablative_transplants">stem-cell transplant conditioning</a>. Last week we did an LP and an MRI to make sure my CSF was A-OK. Tests were negative, which is a positive sign. <a href="http://www.google.com/search?q=arrested+development+%22we've+lost+him%22">Opposite Day in a hospital</a> would be hilarious. More on the tests, and their reliability, later.</p>
<p>The specific conditioning that has been recommended is <a href="http://en.wikipedia.org/wiki/Total_body_irradiation">TBI</a> along with <a href="http://en.wikipedia.org/wiki/Etoposide">Etoposide</a> and <a href="http://en.wikipedia.org/wiki/Cyclophosphamide">Cyclophosphamide</a>. For those of you keeping score at home Cyclophosphamide was part of the <a href="http://health.tommusic.net/2009/07/chemo-round-one/">R-CHOP dream team</a>, known otherwise as Cytoxan. Take a second to go read the &#8220;TBI&#8221; link. It&#8217;s short.</p>
<p>Welcome back! They&#8217;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&#8217;s what my stem cell collection was all about. My stem cells are &#8220;aggressive medical attention&#8221;. &#8220;<a href="http://www.phrases.org.uk/meanings/281850.html">Patient, heal thyself!</a>&#8221;</p>
<p>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&#8217;ll be armed with a (relatively) recently developed drug named <a href="http://en.wikipedia.org/wiki/Palifermin">Palifermin</a>, 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.</p>
<p>On to the dilemma mentioned in the title of this post: the extra head radiation! We met with a <a href="http://medical.washington.edu/bios/view.aspx?CentralId=164880">radiation oncologist</a> 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&#8217;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.</p>
<p>On Friday we met with a <a href="http://medical.washington.edu/bios/view.aspx?CentralId=164382">neuro-oncologist</a> who disagreed. In his opinion, <a href="http://health.tommusic.net/2010/01/catching-up/">the appearance of lymphoma in my CSF</a> didn&#8217;t represent a relapse. He feels that the disease was there all along, and that <a href="http://health.tommusic.net/2009/11/getting-nervous-centrally/">the three doses of methotrexate that we did as a prophylaxis</a> 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 <a href="http://health.tommusic.net/tag/depocyt/">DepoCyt</a> to continue cleaning my head out. He thinks the cognitive risks of the extra head radiation are unnecessary at this point.</p>
<p>The intuition of Jana and I high-fives Dr Chamberlain and <a href="http://health.tommusic.net/tag/dr-taylor/">Dr Taylor</a>, the two <a href="http://yalebraintumorcenter.org/subspecialties/neuroonc.html">neuro-oncologists</a> that have looked at my case, when they say they&#8217;re not comfortable calling this a &#8220;relapse&#8221; 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 <a href="http://en.wikipedia.org/wiki/Lumbar_puncture">LP</a> and <a href="http://en.wikipedia.org/wiki/Magnetic_resonance_imaging">MRI</a> 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 <a href="http://en.wikipedia.org/wiki/Cerebrospinal_fluid">CSF</a> 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.</p>
<p>And so now we&#8217;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&#8217;t want to later regret not being as aggressive as possible. I also don&#8217;t want to later regret opening myself to the risk of some sort of brain damage.</p>
<p>And I need to decide soon.</p>
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		<item>
		<title>A Big New Treatment is Approaching at Full Throttle</title>
		<link>http://health.tommusic.net/2010/02/a-big-new-treatment-is-approaching-at-full-throttle/</link>
		<comments>http://health.tommusic.net/2010/02/a-big-new-treatment-is-approaching-at-full-throttle/#comments</comments>
		<pubDate>Thu, 25 Feb 2010 18:52:18 +0000</pubDate>
		<dc:creator>Tom</dc:creator>
				<category><![CDATA[Treatment Phase]]></category>
		<category><![CDATA[autologous stem cell transplant]]></category>
		<category><![CDATA[bone marrow]]></category>
		<category><![CDATA[central nervous system]]></category>
		<category><![CDATA[conditioning]]></category>
		<category><![CDATA[high-dose methotrexate]]></category>
		<category><![CDATA[legs]]></category>
		<category><![CDATA[lizard brain]]></category>
		<category><![CDATA[methotrexate]]></category>
		<category><![CDATA[pain]]></category>
		<category><![CDATA[scca]]></category>
		<category><![CDATA[stem cell collection]]></category>
		<category><![CDATA[stem cells]]></category>

		<guid isPermaLink="false">http://health.tommusic.net/?p=197</guid>
		<description><![CDATA[And as the first three methotrexate treatments went, so did the fourth. Once more I checked into the hospital on a Monday and then checked out on Thursday. 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 [...]]]></description>
			<content:encoded><![CDATA[<p>And as the first three methotrexate treatments went, so did the fourth. Once more I checked into the hospital on a Monday and then checked out on Thursday.</p>
<p>This time I wanted to do everything I could to avoid <a href="http://health.tommusic.net/2010/01/side-effects-and-response-rate/">suffering through the joint pain on Saturday</a> morning. My <a href="http://www.instantbrainstorm.com/lizard_brain.html">lizard brain</a> 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.</p>
<p>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.</p>
<p>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.</p>
<p>I did the same thing on Saturday, and on Sunday. That would&#8217;ve been a lot of days in the hospital!</p>
<p>I&#8217;m glad that&#8217;s done with.</p>
<p>Next we scheduled an appointment with a transplant specialist doctor at the <a href="http://www.seattlecca.org/">SCCA</a> 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.</p>
<p>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.</p>
<p>This is a biblical-flood sort of treatment. When we <a href="http://health.tommusic.net/2009/11/a-collectors-item/">collected the blood stem-cells back in November</a>, that was us preparing am ark. Now we&#8217;ll irradiate my entire body and fill it with a crazy amount of chemo, in a stage known as &#8220;conditioning&#8221;. This will hopefully kill off any remaining individual lymphoma cells. Unfortunately it also kills offy bone marrow (and along with it, my body&#8217;s ability to produce new blood cells).</p>
<p>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.</p>
<p>As part of this, I think I&#8217;ll lose a lot of the immunities my body has built up over the year. We&#8217;re really hitting the reset button!</p>
<p>There&#8217;s one additional question to be answered: there wasn&#8217;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&#8217;ve found), and am aggressive approach is more likely to get it all.</p>
<p>This can, however, cause damage to healthy brain tissue. Possible decreases in memory strength, among other undesireable things.</p>
<p>I need to decide soon, but I&#8217;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.</p>
]]></content:encoded>
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		</item>
		<item>
		<title>Day Two of Round Three of Volume Two</title>
		<link>http://health.tommusic.net/2010/01/day-two-of-round-three-of-volume-two/</link>
		<comments>http://health.tommusic.net/2010/01/day-two-of-round-three-of-volume-two/#comments</comments>
		<pubDate>Wed, 27 Jan 2010 03:40:57 +0000</pubDate>
		<dc:creator>Tom</dc:creator>
				<category><![CDATA[Treatment Phase]]></category>
		<category><![CDATA[antidote]]></category>
		<category><![CDATA[high-dose methotrexate]]></category>
		<category><![CDATA[infusion]]></category>
		<category><![CDATA[leucovorin]]></category>
		<category><![CDATA[methotrexate]]></category>
		<category><![CDATA[rescue dose]]></category>
		<category><![CDATA[virginia mason]]></category>

		<guid isPermaLink="false">http://health.tommusic.net/?p=193</guid>
		<description><![CDATA[Here I am, coming to you live from Virginia Mason hospital on the second day of the third round of high-dose Methotrexate! Last night we began the MTX infusion around 6:30 or 7pm. It finished near 11pm or midnight. I&#8217;ve had a bit more nausea this time around, but nothing so bad that we can&#8217;t [...]]]></description>
			<content:encoded><![CDATA[<p>Here I am, coming to you live from Virginia Mason hospital on the second day of the third round of high-dose Methotrexate!</p>
<p>Last night we began the MTX infusion around 6:30 or 7pm. It finished near 11pm or midnight. I&#8217;ve had a bit more nausea this time around, but nothing so bad that we can&#8217;t stay ahead of it with Lorazepam (Ativan). This also has the side-effect of making me a little loopy; I completely forgot that Dr Norman came by to visit this morning!</p>
<p>It is very important to have a teammate that has all of his/her marbles, because sometimes you lose yours. Thanks Jana!</p>
<p>He came back by to reiterate that he DID, in fact, stop by and to re-mention what we&#8217;d discussed earlier.</p>
<p>As for the rest of the day, he schedule calls for 24 hours of &#8220;grace&#8221; before we start sending in the rescue dose of Leucovorin.</p>
<p>The Methotrexate works (generally) by pretending to be one of the nutrients needed during the cell replication process. When a cell (let&#8217;s suppose a lymphoma cell) starts to duplicate, it needs raw materials like Folic acid. MTX finds the places that are seeking Folic acid and grabs onto them, locking them down. Without the ability to absorb Folic acid, the cell ends up starving to death.</p>
<p>The &#8220;rescue dose&#8221; of Leucovorin is able to sneak around some of the MTX lock-down. We give the MTX 24 hours to work on starving the really fast dividing cells, and then bring in the Leucovorin to start saving the stuff that hasn&#8217;t already been caught replicating.</p>
<p>Early bird gets the chemo.</p>
]]></content:encoded>
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		</item>
		<item>
		<title>Side Effects and Response Rate</title>
		<link>http://health.tommusic.net/2010/01/side-effects-and-response-rate/</link>
		<comments>http://health.tommusic.net/2010/01/side-effects-and-response-rate/#comments</comments>
		<pubDate>Mon, 25 Jan 2010 06:27:58 +0000</pubDate>
		<dc:creator>Tom</dc:creator>
				<category><![CDATA[Treatment Phase]]></category>
		<category><![CDATA[arthralgia]]></category>
		<category><![CDATA[autologous stem cell transplant]]></category>
		<category><![CDATA[depocyt]]></category>
		<category><![CDATA[dexamethasone]]></category>
		<category><![CDATA[dr norman]]></category>
		<category><![CDATA[intrathecal]]></category>
		<category><![CDATA[legs]]></category>
		<category><![CDATA[methotrexate]]></category>
		<category><![CDATA[mri]]></category>
		<category><![CDATA[pain]]></category>
		<category><![CDATA[percocet]]></category>
		<category><![CDATA[scca]]></category>

		<guid isPermaLink="false">http://health.tommusic.net/2010/01/side-effects-and-response-rate/</guid>
		<description><![CDATA[The Friday after my first high-dose methotrexate was New Years Eve. We partied with some friends in Wallingford, and then the group walked to Gasworks Park to watch the fireworks at the Space Needle. My legs were absolutely exhausted by the walk to and back. They were not happy at all. The next morning the [...]]]></description>
			<content:encoded><![CDATA[<p>The Friday after my first high-dose methotrexate was New Years Eve. We partied with some friends in Wallingford, and then the group walked to Gasworks Park to watch the fireworks at the Space Needle. My legs were absolutely exhausted by the walk to and back. They were not happy at all. The next morning the workers through themselves upon the gears.</p>
<p>I awoke to intense pain in all of the joints in my legs. Terrible pain like they were broken. But they weren&#8217;t; they all moved fine. And thank goodness this was pain that could be pierced by Percocet!</p>
<p>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.</p>
<p>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.</p>
<p>Next time I&#8217;ll take Friday night off entirely and see if that changes things.</p>
<p>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&#8217;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.</p>
<p>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.</p>
<p>In a few weeks we&#8217;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).</p>
<p>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&#8217;ve started the Dex now and we&#8217;ll roll the treatment into the rest of the party on Monday.</p>
<p>Tomorrow we start round three.</p>
]]></content:encoded>
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		<item>
		<title>Chemotherapy, Volume Two, Round Two B</title>
		<link>http://health.tommusic.net/2010/01/chemotherapy-volume-two-round-two-b/</link>
		<comments>http://health.tommusic.net/2010/01/chemotherapy-volume-two-round-two-b/#comments</comments>
		<pubDate>Tue, 12 Jan 2010 22:21:47 +0000</pubDate>
		<dc:creator>Tom</dc:creator>
				<category><![CDATA[Treatment Phase]]></category>
		<category><![CDATA[depocyt]]></category>
		<category><![CDATA[high-dose methotrexate]]></category>
		<category><![CDATA[leucovorin]]></category>
		<category><![CDATA[methotrexate]]></category>
		<category><![CDATA[nystagmus]]></category>
		<category><![CDATA[uvula]]></category>
		<category><![CDATA[velopharyngeal inadequacy]]></category>
		<category><![CDATA[virginia mason]]></category>

		<guid isPermaLink="false">http://health.tommusic.net/?p=190</guid>
		<description><![CDATA[Last Friday was my second intrathecal dose on Depocyt, and yesterday I re-admitted to the hospital to start my second round of high-dose Methotrexate. The drip finished up around 11pm, so the rescue doses of Leucovorin antidote will start up around that time. This morning I got to be a teaching aide, too! A program [...]]]></description>
			<content:encoded><![CDATA[<p>Last Friday was my second intrathecal dose on Depocyt, and yesterday I re-admitted to the hospital to start my second round of high-dose Methotrexate. The drip finished up around 11pm, so the rescue doses of Leucovorin antidote will start up around that time.</p>
<p>This morning I got to be a teaching aide, too! A program coordinator stopped by and asked if I would mind having a second-year UW medical student come in to ask about my patient history and perform some physical examinations. I said &#8220;sure!&#8221; and for the next hour and a half Preetma asked me about the events leading up to today and did a basic patient physical examination. Not long after, her entire group (along with the coordinating instructor) piled into the room and Preetma was prompted to give a <em>very</em> condensed 5-minute summary of my how-did-we-get-here story.</p>
<p>The instructor had some of the other students examine points of interest regarding my neurological signs, which revealed that some less obvious things still remain to recover. My left eye seems to still exhibit a bit of <a href="http://en.wikipedia.org/wiki/Physiologic_nystagmus">nystagmus</a> at its extent and my uvula remains a bit deviated to one side (though my <a href="http://en.wikipedia.org/wiki/Velopharyngeal_insufficiency">velopharyngeal inadequacy</a> <em>feels</em> resolved).</p>
<p>After the session with the class we all chatted for a bit about Jana and my perspectives on what make for effective relationships between doctors and patients.</p>
<p>And now I&#8217;m back to working on my computer and enjoying the entirely reasonable room service offered here. My view out the window, while a bit hazy, is nice and interesting. Out of the corner of my eye I can see I-5 and the commute that I&#8217;m not stuck taking. <img src='http://health.tommusic.net/wp-includes/images/smilies/icon_smile.gif' alt=':-)' class='wp-smiley' /> </p>
]]></content:encoded>
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		</item>
		<item>
		<title>Catching Up</title>
		<link>http://health.tommusic.net/2010/01/catching-up/</link>
		<comments>http://health.tommusic.net/2010/01/catching-up/#comments</comments>
		<pubDate>Fri, 08 Jan 2010 20:41:19 +0000</pubDate>
		<dc:creator>Tom</dc:creator>
				<category><![CDATA[Diagnostic Phase]]></category>
		<category><![CDATA[antibiotics]]></category>
		<category><![CDATA[bells palsy]]></category>
		<category><![CDATA[cat scan]]></category>
		<category><![CDATA[cerebrospinal fluid]]></category>
		<category><![CDATA[charing cross hospital]]></category>
		<category><![CDATA[chelsea and westminster hospital]]></category>
		<category><![CDATA[codeine]]></category>
		<category><![CDATA[complete remission]]></category>
		<category><![CDATA[ct scan]]></category>
		<category><![CDATA[cytarabine]]></category>
		<category><![CDATA[depocyt]]></category>
		<category><![CDATA[dexamethasone]]></category>
		<category><![CDATA[dilaudid]]></category>
		<category><![CDATA[diplopia]]></category>
		<category><![CDATA[disphagia]]></category>
		<category><![CDATA[dr feldman]]></category>
		<category><![CDATA[dr norman]]></category>
		<category><![CDATA[dr taylor]]></category>
		<category><![CDATA[ear infection]]></category>
		<category><![CDATA[fentanyl patch]]></category>
		<category><![CDATA[group health]]></category>
		<category><![CDATA[guys and st thomas hospital]]></category>
		<category><![CDATA[heathrow airport]]></category>
		<category><![CDATA[heparin]]></category>
		<category><![CDATA[hospital hotel dieu]]></category>
		<category><![CDATA[intrathecal chemotherapy]]></category>
		<category><![CDATA[lumbar puncture]]></category>
		<category><![CDATA[methotrexate]]></category>
		<category><![CDATA[mri]]></category>
		<category><![CDATA[myasthenia gravis]]></category>
		<category><![CDATA[neurological symptoms]]></category>
		<category><![CDATA[pain]]></category>
		<category><![CDATA[permanent remission]]></category>
		<category><![CDATA[pet scan]]></category>
		<category><![CDATA[ptosis]]></category>
		<category><![CDATA[victory lap]]></category>
		<category><![CDATA[virginia mason]]></category>

		<guid isPermaLink="false">http://health.tommusic.net/?p=174</guid>
		<description><![CDATA[Hey there, long time no see! The last month has been a roller-coaster, full of ups and downs. In that order. This is going to be really long. Check with your stomach first: is it growling? Grab a snack before starting to read. I care about your comfort! At the beginning of December we did [...]]]></description>
			<content:encoded><![CDATA[<p>Hey there, long time no see! The last month has been a roller-coaster, full of ups and downs. In that order.</p>
<p><em>This is going to be really long. Check with your stomach first: is it growling? Grab a snack before starting to read. I care about your comfort!</em></p>
<p>At the beginning of December we did a bunch of testing; a PET scan, CT scans, a lumbar puncture, blood tests. All came back clean. <em>Complete remission!</em> The next steps were to come back in a few months for a CT scan and blood tests. Vigilance-mode.</p>
<p>And so we prepared to depart on our &#8220;Victory Lap&#8221; trip to Europe. Paris, the French countryside, Luxembourg, Belgium, and Amsterdam. 13 days, all told. Delicious adventure, beginning on Thursday the 10th.</p>
<p>On the Monday prior I felt absolutely great; my energy level was high, I got a ton of work accomplished and cleaned up the house like crazy.</p>
<p>On Tuesday we met with Dr Norman for the official all-clear. I had a little bit of pain near my ears that reminded me of the fun times I shared with Bell&#8217;s Palsy.</p>
<p>On Wednesday the pain was around just a little bit. It turns out that the &#8220;little bits&#8221; of pain were the tip of an iceberg. Wednesday night I found out the full size of the pain iceberg. I&#8217;d describe it as incredibly sharp <em>and</em> burning. Like a well-honed fireplace poker. It had me curled up in bed whining, and Jana calling the consulting nurse line.</p>
<p>They sounded like they thought it was ear-related, like water or infection. They recommended applying the Fentanyl patch that I&#8217;d been prescribed by Dr Norman after complaining of similar pain in late November. The patch delivers a continuous stream of opiate painkiller into the bloodstream after an initial 8-hour soaking-in period. By applying the patch at night we would know by morning if I would tolerate it for the flight.</p>
<p>The first noticeable sign that the patch was in effect was my inability to keep food down the next morning. My body isn&#8217;t used to handling continuous or large amounts of opiate painkillers, and it didn&#8217;t react well.</p>
<p>The second noticeable sign was that I had some big problems staying awake. Every 30-60 minutes I would start to doze off. This made the flight itself largely indistinct in my memory. I brought along books and movies, and there was plentiful in-flight entertainment, but I consumed none of them. Instead I slept, and was excited when I was able to keep down the offered orange juice. Small victories!</p>
<p>We arrived in Paris, watched someone get scammed and pick-pocketed on the train, and eventually found our hotel. It was quaint and cozy, which is a pleasant way of saying old and small. The view from the window was the best part of the room. We looked out east upon part of the Latin Quarter.</p>
<p><a href="http://health.tommusic.net/wp-content/uploads/2010/01/IMG_14051.jpg"><img class="aligncenter size-medium wp-image-177" title="View from Paris Hotel" src="http://health.tommusic.net/wp-content/uploads/2010/01/IMG_14051-225x300.jpg" alt="" width="225" height="300" /></a></p>
<p>A 15-second walk from the building was a crepe stand, and I was able to eat half of a chocolate crepe before I felt like I needed to stop. That patch made it hard to dive in and enjoy the food!</p>
<p>Not long after we arrived I collided with the iceberg of pain again. Curled up whining on the uncomfortable bed, the patch didn&#8217;t take away the pain. It just made me fall asleep every once and awhile. I slept in 30-60 minute bursts.</p>
<p>This continued for every night that we were in Paris. And also during some parts of the days. The patch eventually wore off, and I was able to eat food again, but the pain remained and continued to mess with my sleeping.</p>
<p>There was one day when we got out to do a little bit of sightseeing at Jardin de Plant and the Evolution Museum. Then there was another <em>great</em> day when we walked to the <a href="http://en.wikipedia.org/wiki/Basilique_du_Sacré-Cœur,_Paris">Basilique du Sacré-Cœur</a>, <a href="http://en.wikipedia.org/wiki/Notre_Dame_de_Paris">Notre Dame de Paris</a>, and <a href="http://en.wikipedia.org/wiki/Musée_d%27Orsay">Musée d&#8217;Orsay</a>. I was really glad we got to have those together.</p>
<p><a href="http://health.tommusic.net/wp-content/uploads/2010/01/IMG_1419.jpg"><img class="aligncenter size-medium wp-image-180" title="From Sacre Cour" src="http://health.tommusic.net/wp-content/uploads/2010/01/IMG_1419-300x224.jpg" alt="" width="300" height="224" /></a></p>
<p>Eventually we checked out of the hotel early to go to the <a href="http://en.wikipedia.org/wiki/Hôtel-Dieu_de_Paris">Hospital Hôtel-Dieu</a>, and the hotel graciously didn&#8217;t charge us for the rest of our reservation. After a 20-minute wait the doctor in the emergency room took a look in my ear and said the pain was due to flying while having an ear infection. He prescribed an antibiotic and a codeine painkiller and sent me on my way.</p>
<p>We decided that recovering from something so painful would be best done in a relaxed and comfortable setting, and Paris didn&#8217;t seem like the place to find it. We contacted some family friends that live in London and they very generously offered to host us while I attempted to recover. We took metro to Paris Nord station and hopped on the Eurostar train to London. Once we were underway we realized: if the pressure change from the flight caused the pain, would the pressure changes in the Channel Tunnel do the same? Fortunately they did not.</p>
<p><a href="http://health.tommusic.net/wp-content/uploads/2010/01/IMG_1432.jpg"><img class="aligncenter size-medium wp-image-181" title="View from House in London" src="http://health.tommusic.net/wp-content/uploads/2010/01/IMG_1432-300x225.jpg" alt="" width="300" height="225" /></a></p>
<p>In London we were treated to delicious home-cooked meals and gracious hospitality. But the pain remained. Near the end of the antibiotics course I could note no improvement. And the prescribed painkillers served to make me drowsy, but did nothing to melt the iceberg. So we went to the emergency room at the <a href="http://en.wikipedia.org/wiki/Chelsea_and_Westminster_Hospital">Chelsea and Westminster Hospital</a>. After a 3-hour wait the doctor looked in my ears, looked for physical signs of meningitis, and then said that he thought there was some inflammation or water behind my ears that was causing the pain. He referred us to the emergency room at <a href="http://en.wikipedia.org/wiki/Charing_Cross_Hospital">Charing Cross Hospital</a>, specifically to see an on-call <a href="http://en.wikipedia.org/wiki/Otolaryngology">ENT</a> doctor who would provide some better expert opinion.</p>
<p>This other doctor looked in my ears and said that she believed the pain was because I had water behind my ears and a bunch of congestion. She felt that the two were combining to create pressure that in-turn caused the pain. She recommended decongestants and not flying until it was improved. She noticed that my left eyelid was drooping a bit, but I felt that my right eyelid was probably under some light <a href="http://health.tommusic.net/2009/09/a-complication-draws-near/">Bell&#8217;s Palsy effect</a> (opening too much) and that my left eye was just compensating.</p>
<p>But the decongestants didn&#8217;t help. Even when I was all cleared up, the pain remained. Maybe we just needed to give it some time. We decided it was time to return to tourist mode, so we bid farewell to our hosts and headed to a <a href="http://www.thegrandattrafalgarsquare.com/">hotel</a> in Trafalgar Square. We got out for a short walk and a nice Italian lunch, but I spent the rest of the time miserable in the room.</p>
<p>I started to notice that my <a href="http://en.wikipedia.org/wiki/Ptosis_(eyelid)">left eyelid was drooping</a> even more, and my vision was a bit affected. Blurry. Sometimes <a href="http://en.wikipedia.org/wiki/Diplopia">double-vision</a>, like when you go cross-eyed. And my legs and arms were weaker. And <a href="http://en.wikipedia.org/wiki/Disphagia">swallowing food was a little more difficult</a>; like when you eat something really dry and it feels like it gets stopped-up in your throat.</p>
<p>And these things got worse. It was getting hard to put a glove on my right hand, because the two middle fingers were pretty much completely limp. My right tricep was getting less and less responsive.</p>
<p><a href="http://health.tommusic.net/wp-content/uploads/2010/01/IMG_1438.jpg"><img class="aligncenter size-medium wp-image-183" title="Ticket at St Thomas Hospital" src="http://health.tommusic.net/wp-content/uploads/2010/01/IMG_1438-225x300.jpg" alt="" width="225" height="300" /></a></p>
<p>New symptoms; it was time to go to the hospital again. This time we were closest to <a href="http://en.wikipedia.org/wiki/Guy%27s_Hospital">Guy&#8217;s Hospital</a>. After a 30-minute wait we were taken a bed in the Major Treatment room, where we waited for another 30-minutes before seeing our first doctor. She did a series of tests, including a bunch of physical tests of neurological symptoms: testing reflexes, coordination, muscle strength, eye movement. There were definitely some problems. We shared with her the research that I had done online, suggesting the possibility of an auto-immune disorder called <a href="http://en.wikipedia.org/wiki/Myasthenia_gravis">Myasthenia Gravis</a>. She noted that it was definitely on her differential diagnosis list, but that the testing didn&#8217;t reveal the fatigue that is common in cases of MG.</p>
<p>She eventually deferred to a colleague, perhaps at the end of her shift, and he performed a similar battery of tests. His conclusion was that he&#8217;s not sure of the diagnosis, and would like me to stay in the hospital overnight to see a different doctor in the morning during rounds.</p>
<p>They put us up in the Victoria ward with a nice view across the Thames of part of the Parliament. Nice!</p>
<p>During rounds the head-honcho doctor did a truncated neurological exam and then chatted with us for a bit; his conclusion was that for them to diagnose me, we&#8217;d need lots more testing and scans. His recommendation was that we abort our trip and head home to the doctors already familiar with my case.</p>
<p>To the airport! Our hosts from earlier picked us up and took us to Heathrow. Such awesome folks. We owe them a tremendous debt of gratitude.</p>
<p>We spent a bunch of time on the phone trying to get ahold of KLM who had a direct flight to Seattle that we hadn&#8217;t been able to book online. After 30-40 minutes of being on hold, we gave up and decided we&#8217;d book at the airport. Um yeah, about that&#8230;</p>
<p>We were dropped off in terminal 3, and KLM was actually in terminal 4. An elevator, long hallway, another elevator, and we were at the inter-terminal train system. 26 minutes until the train to terminal 4! Maybe Virgin Atlantic has something, they&#8217;re here in terminal 3. We head back up the elevator, long hallway, and elevator. We learn that Virgin&#8217;s flights to the West Coast have all left for the day, but there might be something to NYC left. We head to the counter and wait. Each line only had 3 people ahead of us, but I don&#8217;t think either line moved. Time was up: if we wanted to catch the train to visit KLM, who we knew had a flight, we had to give up on Virgin. And so we did, making it to the train <em>just</em> before it departed.</p>
<p>Elevator, hallway, elevator.</p>
<p>We found the ticket purchase desk for KLM/Air France, and the line was epic. 3 hours epic. The flight left in an hour and a half, there&#8217;s no way that would work. And so I turned on international data roaming on my phone and used the <a href="http://www.kayak.com">Kayak</a> app to find out that British Airways had a flight to Vegas leaving in a few hours. BA, however, was in terminal 5.</p>
<p>Elevator, hallway, elevator. Train back to terminal 3, train connecting to terminal 5.</p>
<p>While waiting for the train I decided to get some backup. I texted my Dad, who was aware of our plans for a quick escape and was listening for pings. It was 2 or 3 AM in the States and he and my Mom woke up to help. The plan was that they would try and book tickets for the BA flight online, quick and easy.</p>
<p>They tried and ran into some &#8220;Transaction Failed, return to the Home Page&#8221; speed bumps. We elevator, hallway, elevatored it up to terminal 5 and found BA&#8217;s line to be no less epic than KLM. There had been a lot of snow-related flight cancellations in France and on the US East Coast, so throngs of travelers were standing in line to re-book. Jana got in line and I found a place to sit. I was feeling really tired and my legs really weak. Staying on the line with my parents, they were eventually able to coax the BA site into buying economy fare tickets for the Vegas flight. I found Jana in the line and we escaped to the check-in computers. We were already in the system. Slick. It was just too close to departure to get seat assignments, so we had to visit the customer service desk where we find that we were &#8220;brilliantly&#8221; automatically upgraded to &#8220;economy plus&#8221;. It&#8217;s just line normal economy, but with better legroom. We&#8217;ll take it!</p>
<p>I foolishly ordered ribs and fries at a restaurant at the airport. At this point I could hardly swallow a fruit smoothie! It was frustrating to have food that I know to be tasty sitting in front of me, and not being able to eat it.</p>
<p>We got some bad news from my folks: the flight to Vegas gets in too late for us to make the connection to Seattle, so we&#8217;ll be staying overnight at a hotel real close to the airport. They took care of booking the hotel and the flight to Seattle in the morning. Two angels, they are.</p>
<p>We get back to Seattle and head straight to the hospital. They give me some IV Dilaudid and that provides my first sweet relief from the pain. Oh man, it was like putting on a warm blanket and removing that hot poker from my head at the same time. We did an MRI and a CT scan, and found out that the pain was due to a huge amount of inflammation of my cranial nerves. And the diagnosis for why there was inflammation?</p>
<p>There was lymphoma stowed away in my brain, and it had finally multiplied enough to cause obvious problems.</p>
<p>Recovery and treatment was going to require some time in the hospital. <a href="https://www.virginiamason.org/home/homepage.cfm">Virginia Mason</a> to be specific.</p>
<p><a href="http://health.tommusic.net/wp-content/uploads/2010/01/IMG_1445.jpg"><img class="aligncenter size-medium wp-image-184" title="View from Virginia Mason Room 1576" src="http://health.tommusic.net/wp-content/uploads/2010/01/IMG_1445-300x224.jpg" alt="" width="300" height="224" /></a></p>
<p>They set me up with Dexamethasone to reduce the inflammation and get started fighting the lymphoma, and more Dialaudid to keep me above the pain. It worked. After a few days I was already seeing my neurological symptoms improving. My eyelid got better, and swallowing improved to the point where I could eat Cream of Potato soup. The double-vision overlapped more.</p>
<p>One thing that was annoying was the amazing love for <a href="http://en.wikipedia.org/wiki/Heparin">Heparin</a> shots. Hospital policy is that patients receive shots of Heparin a few times a day to keep them from developing DVT to inactivity. The shots go in your belly, and man do they sting! Even now, I have faint red circles from the shots. Protip: <em>you can decline the shots. You just gotta be assertive.</em></p>
<p>Dr Feldman, the on-call oncologist for the first week had worked previously with a neuro-oncologist (Dr Taylor) that was based at Virgin Mason. That was a slick connection. She looked at my MRIs and was able to read them with the eye of a brain specialist. Together they put together a recommendation for two different chemotherapy series to be run at the same time.</p>
<p>The first is <a href="http://www.rxlist.com/depocyt-drug.htm">Depocyt</a>, delivered <a href="http://en.wikipedia.org/wiki/Intrathecal">intrathecally</a>, which is built as a sort of time-release capsule of the chemotherapy agent <a href="http://en.wikipedia.org/wiki/Cytarabine">Cytarabine</a>. The second is a high-dose <a href="http://en.wikipedia.org/wiki/Methotrexate#In_cancer_chemotherapy">Methotrexate</a>, administered through my chest port, affecting the entire body (including penetrating the blood-brain barrier). The high-dose Methotrexate course requires a hospital stay at the start of each cycle, because they want to closely manage my recovery after administering the deadly dose of poison. Once my body processes enough of it that the level in my blood is no longer dangerously high, I&#8217;m free to go home until the next round.</p>
<p>This time the cycle length is two weeks (instead of three), and the plan is for at least 4 cycles. We&#8217;ll do some measurement (via MRI) after the second round, and test <a href="http://en.wikipedia.org/wiki/Cerebrospinal_fluid">CSF</a> during each intrathecal infusion.</p>
<p>Now, two weeks after my first round of chemotherapy (which we started on Christmas Day), I&#8217;d say that I&#8217;ve recovered about 80% of what I lost due to the inflammation. My eye is 95%, swallowing is 100%, right-hand ability is 90%, right tricep is back to about 50% of strength (better than 0%!), and the rest of my arms and legs are still at about 70% of strength. If I was to assign numbers to these sorts of things.</p>
<p>I haven&#8217;t collided again with the iceberg of pain since getting out of the hospital, but every once and awhile I spy part of the tip of it in the distance.</p>
<p>I wait in fear to see how my phone bill with all of the international roaming adds up. We had a few hours worth of calling during the &#8220;escape&#8221; stage of the trip, and that&#8217;s not going to be cheap.</p>
<p>And so we&#8217;re back to the &#8220;endure&#8221; stage. Our Victory Lap was premature, but we didn&#8217;t know that at the time. The next few months will be difficult, but it&#8217;s a difficult that we know. A <em>difficult</em> that is <em>imperative</em>.</p>
<p>There&#8217;s cancer in my brain. We have experts we trust that have advised us on a course of treatment. There&#8217;s no choice of &#8220;do we&#8221; or &#8220;don&#8217;t we&#8221;, only of how well we do it.</p>
<p>&#8220;Come on! Are you a <em>can</em>cer patient or a <em>can&#8217;t</em>cer patient?&#8221; Sorry. <img src='http://health.tommusic.net/wp-includes/images/smilies/icon_smile.gif' alt=':-)' class='wp-smiley' /> </p>
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		<title>Ouch Said My Head</title>
		<link>http://health.tommusic.net/2009/11/ouch-said-my-head/</link>
		<comments>http://health.tommusic.net/2009/11/ouch-said-my-head/#comments</comments>
		<pubDate>Mon, 23 Nov 2009 04:16:35 +0000</pubDate>
		<dc:creator>Tom</dc:creator>
				<category><![CDATA[Treatment Phase]]></category>
		<category><![CDATA[apheresis]]></category>
		<category><![CDATA[dexamethasone]]></category>
		<category><![CDATA[dilaudid]]></category>
		<category><![CDATA[dr norman]]></category>
		<category><![CDATA[filgrastim]]></category>
		<category><![CDATA[glucosteroid]]></category>
		<category><![CDATA[headache]]></category>
		<category><![CDATA[hearing loss]]></category>
		<category><![CDATA[intrathecal chemotherapy]]></category>
		<category><![CDATA[methotrexate]]></category>
		<category><![CDATA[neupogen]]></category>
		<category><![CDATA[pain]]></category>
		<category><![CDATA[percocet]]></category>
		<category><![CDATA[tinnitus]]></category>

		<guid isPermaLink="false">http://health.tommusic.net/?p=159</guid>
		<description><![CDATA[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&#8217;ve been dealing with a really annoying headache. Actually the headaches started during the week just before the collection; splitting headaches that couldn&#8217;t be extinguished laying down. I tried [...]]]></description>
			<content:encoded><![CDATA[<p>The victory of the stem cell collection marked the end of needing to give myself the <a href="http://en.wikipedia.org/wiki/Filgrastim">Neupogen</a> shots each night, which is nice. But since then I&#8217;ve been dealing with a really annoying headache. Actually the headaches started during the week just before the collection; splitting headaches that couldn&#8217;t be extinguished laying down.</p>
<p>I tried taking <a href="http://en.wikipedia.org/wiki/Percocet">Percocet</a> to soothe the pain, but that upset my stomach so much that I couldn&#8217;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. <a href="http://en.wikipedia.org/wiki/Hydromorphone">Dilaudid</a> 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&#8217;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.</p>
<p>Back to bed! This time we started a glucosteroid (<a href="http://en.wikipedia.org/wiki/Dexamethasone">Dexamethasone</a>) 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.</p>
<p>My hope was that stopping the Neupogen would make the headaches go away, but they&#8217;ve stuck around. All this week I&#8217;ve had a few different kinds of aches:</p>
<ul>
<li>top of my head, continuous pain like I bumped it on something</li>
<li>front of my head between and above my eyes, seemingly sinus-related</li>
<li>throbbing back of the head pain when I flex my abs or stand up quickly</li>
</ul>
<p>It&#8217;s really not fun. It&#8217;s making me less inclined to be creative or concentrate on things. I weaned myself off of the Dexamethasone on Tuesday, but I&#8217;m considering giving it another try!</p>
<p>Oh, and I have hearing loss and a <a href="http://en.wikipedia.org/wiki/Tinnitus">constant ringing sound</a> on the right side of my head. I&#8217;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&#8217;ll know it&#8217;s lymphoma-related. It hasn&#8217;t gone away yet, which means it isn&#8217;t due to nervous system infiltration of the lymphoma. Good to know! Now that we&#8217;ve got that figured out, it&#8217;s safe for it to go ahead and get better. Right?</p>
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		<title>Getting Nervous (Centrally)</title>
		<link>http://health.tommusic.net/2009/11/getting-nervous-centrally/</link>
		<comments>http://health.tommusic.net/2009/11/getting-nervous-centrally/#comments</comments>
		<pubDate>Mon, 09 Nov 2009 18:46:25 +0000</pubDate>
		<dc:creator>Tom</dc:creator>
				<category><![CDATA[Treatment Phase]]></category>
		<category><![CDATA[autologous stem cell transplant]]></category>
		<category><![CDATA[bells palsy]]></category>
		<category><![CDATA[cell differential count]]></category>
		<category><![CDATA[central nervous system]]></category>
		<category><![CDATA[dr norman]]></category>
		<category><![CDATA[flow cytometry]]></category>
		<category><![CDATA[intrathecal chemotherapy]]></category>
		<category><![CDATA[lumbar puncture]]></category>
		<category><![CDATA[methotrexate]]></category>
		<category><![CDATA[scca]]></category>

		<guid isPermaLink="false">http://health.tommusic.net/?p=147</guid>
		<description><![CDATA[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&#8217;t need an additional vein catheter to make this happen. Bring on the bone pain, bring [...]]]></description>
			<content:encoded><![CDATA[<p>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&#8217;t need an additional vein catheter to make this happen.</p>
<p>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&#8217;d live in a much more peaceful world.</p>
<p>As I was saying: &#8220;bring it on&#8221; &#8212; I&#8217;ll make it though the week or so and then it&#8217;ll be smooth sailing.</p>
<p>Then a call comes in on Thursday: I can stop taking the shots for now. One of the tests from last week&#8217;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.</p>
<p>Bam! We&#8217;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&#8217;t know the full extent of what you&#8217;re facing. So Thursday night we know that there&#8217;s sign of lymphoma in my nervous system, and that this is bad news.</p>
<p>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&#8217;t provide data on their distribution.</p>
<p>While both tests didn&#8217;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&#8217;s even a little bit of lymphoma, we should knock it out before it spreads.</p>
<p>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.</p>
<p>We spent the weekend relaxing with family down near Portland, and I think laying low helped. There weren&#8217;t any headaches from the puncture and no noticeable side effects from the intrathecal chemotherapy. Thank goodness!</p>
<p>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!</p>
<p>Instead of doing six rounds of intrathecal methotrexate, we&#8217;re going to do the same three rounds that he originally proposed as a risk-reducing measure. The conflicting results aren&#8217;t something that he can explain; he&#8217;s a bit baffled by them. One possibility is that my body&#8217;s response to the infection that caused the Bell&#8217;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.</p>
<p>It sounds good in my mind, so that&#8217;s what I&#8217;m going with for now.</p>
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