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Apr 3 10

Cracking Open the Furnace

by Tom

We do daily (though usuually more often than that) checks on the contents of my blood. For the last few days these have been uneventful, specifically the part about 0 white blood cells? Wait, what? Oh yeah, that right, we destroyed my immune system again!

0, 0, 0, 0, etc

Today: 130k! Woo!

The stem cells are in the mix, making new cells. I can’t wait for tomorrow’s numbers.

Mar 26 10


by Tom

So my mouth feels better today than it did yesterday, which is odd. Theoretically things should be heading the other direction! Perhaps the Palifermin is rocking the suburbs of my GI tract, keeping things from getting out-of-hand.

Also: I got a blood transfusion today! My red blood cell count is lower than they’d like, so they ordered up some bags of blood. The first bag went without a hitch; the second bag was not hitchless. I started getting chills and they stopped the transfusion. However, according to the lab, this wasn’t actually a reaction to the blood, and we just wasted half a bag when we stopped it. At least I got a bag and a half, which should do for a few days.

Mar 25 10

The Terrible, Terrible Aftermath

by Tom

You know what they don’t include in disaster movies? The rebuilding. The town gets destroyed by a giant monster, the heroes stop the monster, movie ends.

They never show the months of suffering that the family-owned convenience store goes through as they rebuild. Those kids who have a crater where a park used to live.

The TBI and chemo were the monster. Mucositis is the rebuilding, and it lasts around 15 days. Drinking water causes me to hiccup. My mouth is sore, like, all the time.

It sounds like the main variable that could change in my favor is the magnitude of the mucositis. It will likely not shrink the time, but the Palifermin drug they’ve given me might shrink the depths to which I sink.

But as of right now, just the beginning, this stinks.

Mar 24 10

Sir, Your Stem Cells are Ready

by Tom

Today is “day zero”. A few hours ago a woman arrived with some serious refrigeration hardware that contained two little sacks of blood, and in that blood, stem cells.

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.

Mar 23 10

Not All Side Effects are Equal

by Tom

The side effects of the Etoposide were pretty reasonable, and seemingly short-lived. The one that remains most in muly mind was a feeling of slight inebbriation.

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

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

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

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

Mar 22 10

Feeling Alive Again

by Tom

This seems an odd title to use as I continue this controlled-descent to my near-death. Let us not forget:

We are essentially flooding the entire Earth, save for Madagascar, and then repopulating Madagascar with a bunch of people we’re pretty sure aren’t cancer.

I got word this morning that my white blood cell count is under 100, which puts me in the running to catch just about any two bit infection that strolls in here. That’s why there’s a curtain blocking my door. And an actual door. Plus desks, and I think two levels of elevators. And people dancing in bit promotional costumes shaped like hand-sanitizer bottles. Seriously, folks!

As sleeeeeeepily mentioned before, the first four days of conditioning were total-body irradiation. For this, you are escorted into a room and directed to stand in a box which they take x-ray measurements for your lung blocks. The lung blocks are huge chunks of metal they use to block some of the radiation from hitting your lungs. Your lungs get to sit out half of the sessions on account of their wussy knees.

Then they have you stand in the box again, hold the grips, close your eyes, and START THE BEAMS. The beams are, from sheer muscle-fiber actuating, the least exciting part of the event. A buzzing noise plays to let everyone know that the beams are active, but they really could just have one of those aaaaa-ooooo-gah! horns playing instead. The real magic is where the beams come from…

But for the patient this is all very boring. It was described by one patient as “waiting for a bus that never comes.” Amazingly, however, after all of that waiting, it is all one can do to get a couple of winks. Oh, excuse me for descending into medical jargon. “Couple” is cancer patient for “giant burlap sack”.

As so I napped. Uncomfortably at first, but soon finding my niche. TBI, nap nap, TBI, nap nap nap. Eventually the TBI part dropped out and there was just napping.

Even napping must begat something though, and the human that wrote this post was energetic and full of promise! The human that will write the next post, though ostensibly the same, will not share these qualities…

Mar 18 10

Napping the Days Away

by Tom

Did I mention the light-headedness? For the last month there have been occasional episodes where I’ll stand from a sitting position, and after thirty-seconds find myself light-headed and dizzy. The sensation would last for up to a minute or two, and was really quite debilitating in the wrong moment.

We were pretty sure they weren’t hydration-related, as we thought ourselves to be perfectly capable monitors of that sort of thing. As faced my SCCA doctors about it, and they pointed out that just about any scan that would have indicated something was wrong is already a scan I’ve had recently. Seeing our level of consider, and considering the possibility to having these dizzy spells might complicate the upcoming busy weeks, they decided to move he whole circus inpatient.

And so, a few days ago, I checked-in to the UWMC. I’ve been getting total-body irradiation twice daily, and napping during just about every other waking second. It’s amazing how tiring is it to get your entire body irradiated! And I’m now taking a huge regimen of pills (“to protect against viral infections”, “to protect against bacteria”, “to protect against vorpal swords”) that keep me safe from many common bad guys.

I’ll write in more detail about more of this at more of a later time. I’m tired now, and I think I want to nap before dinner arrives!

[edited 03/22 for wording and clarity]

Mar 11 10

Inching Toward Decisiveness

by Tom

I’ve made a bit of progress on my dilemma on whether or not to go for the cranial/spinal radiation boost. This morning I ran across a study that ends like this:

“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.”

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.

Mar 7 10


by Tom

We’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 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.

Mar 2 10

Every Single Weekday

by Tom

Starting last Wednesday we’ve been visiting the SCCA every single weekday.¬†Well, I had last Friday off. But every other single weekday!

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.