Myeloma, Migration, Fire

Two years out from transplant

noreply@blogger.com (Kevin) — Sun, 10 Jan 2010 18:09:00 +0000

Today's my second "birthday"-- two years out from my stem cell transplant. You'll notice the blog has been sorely neglected, which is a good thing. It has always been largely about myeloma and treatment, and neither is much on my mind these days (finishing up my $#@%$@ dissertation has been). I'll toss out some health-related highlights though:

1. No myeloma detected, through either electrophoresis, immunofixation, or bone marrow biopsy, in over a year. The fully ablative allogeneic transplant was a complete win, for me. It's hard to imagine how scary it seemed two years ago.

2. I'm still on Revlimid, through a trial out of Fred Hutch. Keeping my blood counts up while on the Revlimid has been a bit of a struggle, and my dosage has gradually been dropped from 25mg to 15mg. In the spring, the trial will be over, and I'll talk to both my NJ doctor and the doc in Seattle about whether it makes sense to keep taking the Revlimid. I hope, and think, that it was the graft-versus-myeloma effect that wiped out the myeloma and that the Revlimid played only a supportive role, at most. I think this because my m-spike had been climbing, then suddenly dropped when I had a flare of graft versus host disease. If in fact my new immune system is controlling the myeloma, I may not need the Revlimid. I'm hoping to stop taking it.

3. I've gotten sick a few times, despite the fact that I'm still compulsive about hand hygiene and such. Each time it's taken me longer than it would have in the past to get over it (and the doctors tricked me into the hospital for a night when I had the swine flu), but I basically feel pretty healthy most of the time.

4. I'm back doing most of the things I want to do: rockclimbing, hiking (I did a three-day backpacking trip in Utah), traveling (still no third world countries, alas) and driving the fire truck. I'm still not doing anything other than driving the truck and running the pump with the fire department; going into fires doesn't seem like a great idea. I'm also pretty careful in a lot of respects. Notice the long sleeves and hat for sun protection in the pic above, from the Utah trip.

5. One of cancer's best silver linings came in the form of going to a First Descents camp this summer. It would take me a long, long time to describe the experience, but I will say it was one of the most fun and inspiring experiences I've ever had. If you are a cancer survivor under gae 40, you should check it out.

Take that, Myeloma: "as complete a remission as you can get"

noreply@blogger.com (Kevin) — Mon, 06 Jul 2009 21:23:00 +0000

It's been a while since I posted, so I've got a lot of long overdue, and very good news.
First, I'll brag about my doctor and nurses (Hey Pat!), and my sister Kelly (who just got her MA!)'s cells. Over the last few months, no abnormal monoclonal protein has been detected through serum protein electrophoresis or immunofixation. That no M-spike, not even a faint band.

Today I got the results of a bone marrow biopsy back--no abnormal plasma cells were found.

This is, in the words of my doctor here, "As complete a remission as you can get".

So now I'm off immunosuppressants, still carrying purel everywhere and not drinking, but otherwise acting more or less like a normal human being. I've dropped my revlimid dosage down to 15mg daily, down from 25mg, after problems with my blood counts. (In case you're interested, My doctor in NJ (who just got a richly deserved spot on New York magazine's "Best Doctors" list) thinks that taking the Revlimid after the allo transplant helped, although it's impossible to say for sure).

Now I'll brag on myself. A couple of weeks ago, I received my volunteer fire department's "Outstanding Service" award for 2009. I've been back driving the trucks for a while, but obviously not going into fires, etc. But this award was for the work I've been doing on recruiting, which I started doing while I was sick basically because I couldn't do anything else. Some of the skills I've put to use, like using adobe illustrator (see the pic of a poster I made above) I started picking up in Seattle. So my pretext to brag is just to point out that a lot of good things have emerged from this very bad illness.

Ainsley hits the road--to fight blood cancers

noreply@blogger.com (Kevin) — Sun, 08 Feb 2009 18:18:00 +0000

My girlfriend, Ainsley, is training for the Long Branch (New Jersey) Half Marathon on May 3^rd. More importantly, she will raise at least $2500 for the Leukemia and Lymphoma Society (LLS), but her goal is to raise more.

The Leukemia and Lymphoma Society supports research and patient support for all blood cancers, including myeloma. As many of you know, I was diagnosed with myeloma about a year and a half ago. Thanks to a transplant of my sister Kelly’s stem cells, great care from professionals in New Brunswick NJ and Seattle WA, and the support of friends and family like you, I am healthy today. But there are about 823,000 other Americans living with blood cancers today.

I know that the research funded by LLS on myeloma and stem cell transplantation is part of why I worry about my dissertation, not cancer. Beyond research, LLS does a lot of work to support patients through education or matching recently diagnosed patients to mentors.

At lot of charities do these things, but the sad reality of our health care system is that the support many cancer patients need most is help paying their bills. LLS is the only organization I know of that provides financial assistance to every blood cancer patient who asks for it.

For all these reasons and more, I hope you will donate to the Leukemia and Lymphoma Society. You can donate easily through Ainsley’s fundraising page: http://pages.teamintraining.org/snj/nj09/abrownpoy4

Thank you,

Kevin

Day 365!

noreply@blogger.com (Kevin) — Sat, 10 Jan 2009 18:54:00 +0000

Happy New Year everyone!

The first photo was me exactly one year ago, as I received Kelly's stem cells. The second photo was taken a few weeks ago, and is the picture I got to stick up on the wall in the SCCA transplant clinic. Big improvement in every respect, except for hair coverage.

It's been a great year. It's brought a lot of fun people into my life, shown me the best of many friends, family, girlfriend, and colleagues, and I've felt very creative and productive, even when I've felt very tired. I've been able to teach for the first time in graduate school, and really, really enjoyed it. Cancer really got me into gear in many respects, so I'm not sure it's been a net negative so far, although I'm not recommending it to anyone. I stopped steroids in early December, so I've been feeling much better, exercising normally and putting back on some of the muscle I lost on steroids. I've gotten a couple of colds and other illnesses and survived the, although they took a lot out of me and took me weeks to get over, so the immune system works, if slowly.

In the interest of providing a useful record of my transplant for any other myeloma patients out there, here's a quick health update: I just had a check-up out in Seattle. The important thing is that I saw Pat (my transplant nurse from SCCA), who expressed mild surprise that I had not managed to kill myself through bad judgment or clumsiness (I beleive that's called "beating cancer") without her to keep me in line.

The good news is that things look great. My M-spike remains unquantifiable through SPEP and immunofixation. The bone marrow biopsy showed about 5% plasma cells in the marrow (which is on the high side of normal) and 0.5% myeloma cells through flow cytometry (this is usually an undercount, so it could be as high as 5% or so.

The takeway: The myeloma is definitely still there, but it is at a very low level and being suppressed by my new immune system, Revlimid, or the combination of the two. This could go on for a very long time, perhaps the rest of my life. Of the 40 or 50% of allogeneic pateients who do not relapse before 5 years out (and thus effectively, don't relapse at all), a minority are completely free of detectable myeloma at this point (most have some detectable disease, like I do). So things are right on track.

In terms of my other systems, things look great except for a little bit of osteopenia (reduction in the density of the bones) from the steroids and some slightly elevated liver functons. The former just means I need to drink lots of (soy)milk, the latter may be a sign of GVHD but it's mild enough that we're taking a wait-and see approach. I'm had an upset stomach lately, that is thought to be the effect of drugs, not GVHD. The dietician suggested that I break up my meals into smaller snacks so that I don't end up with an empty stomach, that seems to help. Again, terrific.

In terms of life, the doctors shot down trips to Bolivia and other points in South American in 2009, but 2010 should be a go. I couldn't find a single person who would say yes to 2009, and I definitely tried. They also didn't say anything about travel to Central America or Africa, so I assume that's ok, right? The dietician and I had a long and painful talk about my long term dietary restrictions when traveling, especially in regards to street food: (upshot: epanadas, yes! Those wonderful licuados de guineo from market stalls, definitely, definitely not, ever.

But driving the fire truck to fire calls was approved (which is good, because I've been doing it for a while), as were travel to developed countries (bor-ing!) and contact sports. I've still got to be very careful about colds and crowds and such, but that's pretty instinctive at this point.

Best wishes to everyone--I hope it's a great 2009.

noreply@blogger.com (Kevin) — Mon, 03 Nov 2008 19:09:00 +0000

Man, Obama looks great in a cowboy hat! I like this video because it makes it clear that Latinos are interested in things other than immigration--something which the Obama campaign has understood far better than the McCain campaign. Also, if you can tolerate reggaeton, it's pretty catchy.

Why do these guys keep saying "we were reminded of the economic crisis today?"

noreply@blogger.com (Kevin) — Thu, 16 Oct 2008 02:31:00 +0000

...something tells me I don't want to check my 401k balance....

"...Transplants and all that stuff"

noreply@blogger.com (Kevin) — Thu, 16 Oct 2008 02:04:00 +0000

I guess I have one of those "gold-plated Cadillac" policies.

I want to be Joe!

noreply@blogger.com (Kevin) — Thu, 16 Oct 2008 02:03:00 +0000

Where's Joe Graduate Student in all this? huh?
ActuallyI know him...several of him, actually.
Believe it or not, not of them seems particularly concerned about tax rates in the $250,000 bracket...

If this was basketball...

noreply@blogger.com (Kevin) — Thu, 16 Oct 2008 02:02:00 +0000

it would be McCain tossing up alley-oops for Obama to dunk.
Over
and
Over
Again
It's like a train wreck. I can't bear to watch, but I can't look away.

What?

noreply@blogger.com (Kevin) — Thu, 16 Oct 2008 01:31:00 +0000

McCain Barack Obama mischaracterized McCain's position on immigration. He's confused! That was McCain's campaign! See below....

I think Joe the plumber just moved into "undecided territory."

Wow

noreply@blogger.com (Kevin) — Thu, 16 Oct 2008 01:24:00 +0000

Did McCain really just write down "torture" when Obama was listing the issues McCain disagreed with Bush on? If not, what is he writing?

And I think he said "50% of small business taxes are paid by small businesses". Who pays the rest? Someone should look in to this! I'm calling my accountant.

Wow. I didn't expect McCain to implode this early. I feel really sorry for him, and am pretty disappointed in him. This is great watching, though.

Help a grad student (survey on blogs and diseases)

noreply@blogger.com (Kevin) — Mon, 06 Oct 2008 19:15:00 +0000

..and for once, it's not me. I received the following, and it's legit. It just takes a few minutes.

Hi Kevin,

My name is Justin Guild and I’m a graduate research assistant currently working
with Dr. Jeong-Nam Kim
(http://www.cla.purdue.edu/communication/people/jnkim.shtml) at Purdue
University on a health communication study.

Specifically, our research explores how information sharing behavior through
online communities influences coping strategies among people with chronic
conditions including cancer, diabetes, depression, etc.

I’m contacting you to seek permission to place a link to our online web survey
on your blog to invite readers and other visitors to participate. The survey is
purely academic in nature and takes no longer than 5-7 minutes to complete.

The web survey can be found by clicking on this link:
http://www.createsurvey.com/c/70237-Os3LDl/

In the survey, we use the term “blog” to refer to any online activity where you
might read or share information in communities such as personal web logs,
internet forums, and discussion boards.

The findings of this study could lead to better management capacities of
chronic diseases as well as an increase in funding for research related to
online communities.

If you have any questions, or would like additional information, please don’t
hesitate to contact me at jguild@purdue.edu.

Thank you for your time and consideration.

Sincerely,

Justin Guild

Fire video, Bolivia or the US?

noreply@blogger.com (Kevin) — Mon, 29 Sep 2008 00:42:00 +0000

Going back to work is tough! I'm enjoying assistant teaching, but I end every day basically dead on my feet. Add a little work running recruiting for the for the fire department, and I'm exhausted. The presidential debate was great fun, you can probably guess by now who I thought looked cool and collected and who looked like maybe he's losing it a bit.

Healthwise, the good news is I've dropped another 10mg in my prednisone taper (can't wait to get off this stuff!) and that the cancer markers are still coming back undetectable by electrophoresis and unmeasurable (but detectable) by immunofixation. The one little nagging worry is that my free-light chain ratio (which sometimes "leads" the m-spike...but sometimes doesn't, and is tough to interpret) was up a little at last test results. That introduced the little bit of worry, but honestly I have't thought of it again and definitely haven't been worrying about it. But yeah, now I think I know how people feel when they talk abou worrying about relapse.

But on to more interesting things:
Here's a slideshow that someone at the u made for our FD's recruiting efforts. (One example of Very Bad Firefighting snuck in here...I'd like to point out that the perpetrator isn't from my company and I was in a hospital room getting chemo when it happened (does that count as an alibi?) so I couldn't smack him. )

I'm also follwoing the situation in Bolivia very closely, with great worry. The has been unstable since I first worked with a fire department there (in 2002), but things have never really felt like the country breaking up was anywhere near a real possibility, so I'm worried about the country and my friends there (and whether I'm going to be able to send them a computer, camera, and extrication manuals that RescueCorps has bought them. This blog is a great way to follow the situation and has a funny/sad entry today comparing the crises in the US and Bolivia. Interesting reading, even if I don't fully agree with their analysis on either country.

Interesting: McCain on Immigration

noreply@blogger.com (Kevin) — Sat, 13 Sep 2008 01:31:00 +0000

Man, it's tiring getting back to work. Things are still great, but i get worn out far more easily. But on to politics:

As I posted a long time ago, I really had a very good regard for Senator John McCain because of his work and relative straightforwardness on immigration reform. That was when he had a safe Senate seat, of course. A competitive race, as it turns out, makes a pretty big difference. The Senator withdrew his name from his own bill and arranged to be missing when it came time to vote on it.

So where does he stand now?

Well, that depends on what languages you speak. If you speak English, you would see this from McCain: (Although he essentially dodges the question on whether he would vote for his own bill, he talks a lot about border enforcement, workplace enforcement, etc, but does not mention guestworker programs or legalization except for humanitarian cases)

But, if you speak Spanish and watch Spanish-language TV, you would see this, which I saw on kausfiles:

To summarize, this McCain ad accuses Barack Obama of blocking immigration reform and implies that he said no to "paths to citizenship and guestworkers programs." Neither is really backed up by the facts, although some Republicans feel that an ammendment Obama offered helped sink the bill on their side of the aisle. The ad doesn't actually state that McCain is still for these things, but it does strongly imply to Spanish speakers that he's "on our side."

But it's not the disregard for facts that really gets me here: it's that the McCain campaign is saying one thing to one set of voters and another to another (or so they think). The McCain campaign seems to think that voters, Spanish or English-speaking are incredibly, profoundly STUPID and won't figure this out. I'm tired of our government treating us like we're stupid.

I think the Obama campaign should consider pushing this: I know thatimmigration reform is generally considered to be poison in swing states, but I'd wager that Palin Republicans won't be happy to hear that McCain is telling them one thing and the invaders something else. Likewise, polls show that immigration reform is the top issue for only a minority of Hispanic voters--but being played for fools is a huge issue for all of us.

Note to the Obama campaign: why not just translate this ad and run it in Virginia?)

This is how we do it

noreply@blogger.com (Kevin) — Sun, 24 Aug 2008 17:39:00 +0000

Don't call it a comeback, but I have, judiciously and carefully, been doing a little work at the firehouse lately. Working on recruitment posters and also driving the truck and running the pump on non-emergency calls are ways I can get involved while staying out of harm's way. The pager has stayed off. Although I'd still appreciate it if you didn't tell the doctor. This feels great, because I've missed the work. A lot. And because times are tough for us, as for volunteer fire departments all over the country, and we need all the person-power we can get.

The moment when the "tones drop" for a fire and the firehouse goes from complete silence to a sort of controlled chaos as people run in from all points to hop on the truck is a point of great beauty for me.

The video above, from a 1970's documentary, captures this moment and sets it to some pretty great music. It's pretty much the same these days in our firehouse and thousands around the country: we have pagers now and most guys have gotten a new pick-up trucks since then, but everyone wears pretty much the same clothes, even the guys who weren't alive in the seventies. Some of us ride in on bikes and nobody rides on the tailboard anymore. Otherwise, it's pretty much the same. This was recently posted on Dave Statter's great 911 blog.

Oh, why the hell not....

noreply@blogger.com (Kevin) — Sun, 13 Jul 2008 18:52:00 +0000

makes me want to travel....

FYI, if i recall correctly, that's how madrilenos actually dance.

Cancer and Politics: High risk pools

noreply@blogger.com (Kevin) — Wed, 09 Jul 2008 03:30:00 +0000

I think anyone who's been diagnosed with cancer or cares about someone who has should understand some of the issues raised by this New York Times article on high risk health insurance pools. Here's my take/rant:

As a cancer patient, I'm watching John McCain's health care plan, very, very carefully. It is still in flux as the general election campaign opens up (in the midst of the Republican primary, it essentially didn't exist and proposals related to autism occupied such a significant portion of the healthcare portion of his website that it would have been funny were the issue not so serious).

The reason he's making me so nervous is that McCain's plan aims to shift the health insurance market away from employer-based pools to individuals. There are some virtues in this, but employer-based insurance plays the important role of pooling risk by forcing healthy and unhealthy (actuarily speaking) people into one group. Micro-economically speaking, the larger and more diverse the group, the better the insurance function (this is the merit of single payer plans, which create one universal risk pool and are thus perfect in this narrow sense).

For people like me, who are lucky enough to have good chances of finding a job that offers employer-sponsored healthcare (and who had insurance when diagnosed!), the status quo isn't all that bad, as long as we stick with larger employers, live in the right state, do our research, and think ahead. (I hope I'm right on this, given that I haven't actually made a job transition after diagnosis yet.)

McCain's plan, by offering individual tax credits for health care insurance, intends to shift the market away from employers down to the individual level, which means that individuals are free to enter whatever risk pools insurance companies offer them at a price tailored to their risk profile. This is likely to mean greater "sorting" by risk profile (whether one can really call this "insurance" anymore is a philosophical debate). A year and a month ago, this would have looked like a great deal for me, as my risk profile was unbeatable. But for anyone whose risk profile looks like mine now does (or Senator McCain's does), this essentially means that private insurance would be prohibitively expensive.

McCain's solution to this problem is a "high risk pool" that would insure those who cannot purchase it through private insurance. Pooling together the highest risk individuals to share their risk is a bit like sending off all the heaviest shipwrecked passengers in the same lifeboat. It's problematic by nature. More importantly, this is clear evidence that there is a gap between what private markets, as structured by the government, are able to do and what society want them to do.

Some states have done this and had it come out decently, usually by tossing the high risk people in with the public employees, or some other such way of spreading out their risk onto a broader risk pool, and by subsidizing it. In other states it has meant high costs (to both patients and taxpayers) and/or miserable coverage in terms of both the plans offered and the proportion of patients covered.

If McCain's plan does suceed in discouraging employer coverage, and the high risk pool is poorly executed, the result could be a lot, lot worse than the status quo for people like me. (Excuse me for being partisan for a moment, but these days when I think "Republican administration," I don't think "brilliant execution."I just hope McCain doesn't let the people running/ruining his campaign, whoever they are today, plan this one out.)

So I'm deeply worried by McCain's idea, because I think so far it misunderstands what to me is the most important function of health insurance, which is to pool risk and thereby provide insurance against catastrophic changes in health. Of course, the devil is in the details: There are ways that the high risk pool could work, I guess, and there are ways to fix the plan without resorting to the high risk pool, such as by requiring insurers to enroll anyone who already has health coverage, without regard to pre-existing conditions, as some states (including mine, I believe) do. Within McCain's plan, this would need to be done nationally, so every health insurance company doesn't relocate to Texas. But if poorly planned and executed, reliance on high risk pools could make today's pitiful spectacles like Oregon holding a lottery for the chance to enroll in its health insurance plan seem humane and dignified by comparison.

I'm open to learning more about the Senator's ideas and encouraged by the fact that his plan has been taking form on an ongoing basis, so it may very well improve. However, given that he's been dragged to this issue (and domestic issues in general) kicking and screaming, I'm frankly not too hopeful on solid details emerging.

Note: I would wager from his biography that Senator McCain has been covered by, or at least had access to, a healthcare plan via the federal government and military (which, being a very large employer, provides excellent risk pooling) for almost his entire life. I wonder if he would feel as comfortable with individual health insurance markets if he had some experience with them. A quick course in microeconomics wouldn't hurt, either, Senator...say the word and I'd bet Paul Krugman would be on his way. It's not too late!

Another note: I'm enjoying reading a slim, simple book called Healthcare, Guaranteed by Ezekiel Emanuel. A review from the Financial Times is here. I'm only partway through it, thanks to the demands of work reading, but so far it has been an enlightening, balanced, and clear introduction to healthcare reform and introduces some issues and history I hadn't thought of. So far, I highly recommend it. His proposal is like neither McCain's or Obama's, and so far sounds better than both.

Celebrating one year of cancer....with a ZERO M-SPIKE! That's NO DETECTABLE CANCER!

noreply@blogger.com (Kevin) — Tue, 01 Jul 2008 17:22:00 +0000

A few days ago marked one year since I went into the oncologist's at the local hospital one morning for a bone marrow biopsy. My reaction: "I totally deserve to go to Cox's for an egg and cheese sandwich after putting up with this sort of abuse." Afterward, the doctor sat me down and told me that they were pretty sure I had myeloma, that outcomes were generally not good, that I needed to be treated at a major research center and have an extensive support network, even consider moving back home, etc., etc. Very scary-sounding stuff (the next doctor, my current one, was not nearly as scary). My reaction: "*$%@ vegetarianism and cholesterol, I'm getting an egg sandwich with double bacon AND a donut."

The egg sandwich and the donut were delicious, and it has been a good year. The nasty parts of treatment have been more than overwhelmed by the kindness and humor of friends, family, colleagues, medical professionals, other cancer patients. Feeling a little more mortal hasn't hurt my focus on the things I like to do, whether work, volunteer work, thinking, or play, either. It has been a stressful year for people around me, but I have yet to lose any sleep thinking about myeloma (thinking about insurance coverage was another story, for a brief period). I could go on, but there is more important news.

This morning we got back the latest SPEP (serum protein electrophoresis) results, and there is no detectable M-protein-- that is, the abnormal protein secreted by myeloma cells is at a level where the most sensitve test available cannot detect it. Of course, this needs to be confirmed over time and with other tests, but in myeloma, that's as close as one can can get to no cancer, a complete remission. Basically, we've pummeled the living crap out of the cancer using my sister's cells, Revlimid, Prednisone, and the original blast of melphalan and busulfan. I'm getting another egg sandwich tommorow to celebrate (but no donut...see below).

Of course, this doesn't mean the myeloma is gone, or that it will never come back, or that treatment stops (far from it-- most of my treatment now is not directly related to the cancer, but rather the aftereffects of the transplant, and I'll probably stay on Revlimid for a long time still, up to two years in this trial). But this is exactly where I want to be at this point. It is a milestone that many myeloma patients never reach, and the first step in getting to a point where I'm no longer being actively treated, a long ways down the road. The nurse-practictioner even decided to give me a week off in celebration- next week will be the first week in over six months where I don't see a doctor or nurse.

Treatment notes, possibly useful for other patients, useless to everyone else: The Zometa made me feel like crap the next morning, like I had spent the night rolling down a mountain. No-one mentioned this until later, so I was mystified, but apparently it does that. Also, the Prednisone has given me high blood sugar (three tins of grandmother's chocalate and peanutbutter-chip cookies couldn't have helped), so they put me on a diabetes drug. Weeeeeee....Also, I've found that waking up at 4 or5 or in the morning to take my Prednisone, then going back to sleep helps me avoid losing mornings to the prednisone crash, now that I'm only taking it every other day.

boosting the bones

noreply@blogger.com (Kevin) — Wed, 25 Jun 2008 13:58:00 +0000

Warning: some of the attempts at humor in this are particularly excrutiating. But what else is new?

Yesterday was more steroid-related fun. It involved getting hooked up to the IV for the first time since I returned from Seattle. Infusions, no matter how easy and short, are a little dispiriting, as the beds and comfy recliners and televisions spewing daytime programming and the wristbands and needles make one feel like a patient even if you walk in feeling like a rockstar.

Note to cancer center administrators: In the treatment area, how about ditching a few of the recliners and tvs, and putting in a couple of stations of a little desk with a work chair, power plug, and ethernet connection? And can they stick the IV somewhere other than the back of the hand, which makes it a *^%& to type? Next time I'll ask. Or, better yet, how about a Wii with Guitar Hero and Rock Band?

For those of us taking off work for an "easy" drug, it would make life easier, and I bet some of the patients who are having a rough day (I've been there) and really need those recliners or are pretty stoked to be watching Rachel Ray (I've been there, too, frequently) would be cheered up by seeing a little more energy around the joint.

I was in for a every-other month dose of Zometa, which is a biphosphonate that helps strengthen bones. High dose corticosteroids can, with time, cause osteoporosis (I also take calcium and vitamin-D supplements), so my doctor recommended I go on it as a preventative measure. Zometa is also used for myeloma patients with more advanced disease to fight bone lesions.

This was one of the few times I've had a "Whooooaaaa.........wait a minute" moment with my doctor. Zometa can cause "osteonecrosis of the jaw." Agrravating risk factors include being on steroids and having myeloma. Hmmmmm....

I wasn't sure what that osteonecrosis was, but thanks to a year of middle school Latin (Salve, Magistra Adamsa!), I know that I don't want anything to do with something with the root "necro" in it. There's a reason you don't see ads for a Toyota Necrolla or a Buick Necropolis.

However, my doctor explained that the risk was very low for me, the benefits potentially high, especially for someone who is ignoring the official guidance not to stress his bones by running while on steroids (walking, biking, etc. all are highly recommended), and that I would get it infrequently, minimizing risk. Additionally, Zometa has been show to kill myeloma cells in the test tube. So when I get the infusion, first I have to climb into this giant test tube...(hey, I warned you)

Treatment has become relatively less fun, entertaining

noreply@blogger.com (Kevin) — Thu, 19 Jun 2008 21:54:00 +0000

I haven't been posting much lately because, well, my recovery has been boring me lately. I figured the blog's raisons d'etre were to a) keep family, friends, and oddsmakers posted on my recovery b) provide other patients with some idea of what it was like to get a stem cell transplant. I've restrained myself from dwelling too much on other topics, as I figure they are of less general interest.

Coming back to the east coast marked a subtle transition: I have become less interested in my recovery. To tell the truth, the stem cell transplant was kind of fun. I'm not a masochist; a great deal of it was very unpleasant. Only now can I look at photos of myself in the hospital without wretching and there are still some foods I can't really think about. But I was really pumped up for the transplant and very intensely focused on every aspect of it. As I got stronger, every jog felt like a victory and moments like going out to eat for the first time were cherished. Getting to explore a new city was an added bonus. My"job" was getting enough sleep and eating as much as possible (Those of you who know me, know this is what I was born to do). The fascinating and goofy parts of the process and the people I met along the way were also a lot of fun. Overall, I honestly had a good time in Seattle, although I certainly wouldn't have chosen to go there for that particular purpose.

It was hardly a let-down coming back home or getting back into normal life: seeing friends, going in to the office and getting reengaged with research, just waxing the fire truck have all been really sweet moments. As real life resumes, treatment has become less of a focus and more of an inconvenience, particularly now that I have to drive an hour each way for clinic visits. This is terrific, but it does mean less blogging. At the same time, I think my experience is still potentially useful to others, so I'm definitely going to keep up the blog.

The other thing that has made me less enthusiastic about cancer treatment is that steroids (which I'm on for GVHD) are a pain. I mean, they aren't all that bad, but it's much harder to put on muscle (I have to work out hard just to maintain what I've got, and a good run or workout will leave me sore for days) and I gain "other-than-muscle" weight very easily (retribution for years of being able to eat whatever i wanted). I'm perhaps a little quicker to anger, and my energy levels can go up and down pretty radically. I have to be very careful about sun exposure and of course my immune system is very suppressed, which together mean I still feel pretty vulnerable. Again, none of it is a real big deal, but it is definitely a transition from when I was feeling physically stronger every day and wanted to crow about it to the world; being on steroids feels like being stuck in neutral for a while. Plus, most of the jokes it inspires are usually waaay too personal, thus, not good for blogging.

Correction on previous post

noreply@blogger.com (Kevin) — Thu, 19 Jun 2008 21:44:00 +0000

Let's face it, this ain't exactly the New York Times here, people. But two perceptive comments on my last post made me want to clarify it. I said something along the lines that a cure for myeloma was unrealistic. As the commentators pointed out, there are myeloma patients who have 10+ years without disease recurrence. Most of them got to this via allogeneic stem cell transplant, which, by introducing a new immune system can actually kill the stem cells that go haywire. That's exactly why I decided to have the transplant, and to have a full transplant (which has the only proven track record of a "cure.") I'm lucky, as this is an option available to only a minority of mm patients. That is definitely still the plan, and I feel like I'm headed in that direction. The point that I should have made in reference to the articles is that a "cure" isn't the only good outcome; staying in good health and one step ahead of both the disease and the treatment for a long time without a cure is also becoming a possibility for many people.

Good perspectives on cancer treatment

noreply@blogger.com (Kevin) — Wed, 18 Jun 2008 02:53:00 +0000

So I haven't been posting much lately. I've been too preoccupied by trying to grow basil, bake bannana bread, and get some work done. But I saw two good, simple articles related to cancer treatment that add some needed perspective. The first, from Slate is about how advances in survival come (with some exceptions) not from "magic bullet" new drugs, but from research on how to combine and sequence them. The second, from the New York Times, is about "hitchhiking" from one treatment to another.

Certainly, the two articles together seem to descibe the state of the art in multiple myeloma: a host of new treatments, from mini-allo stem cell transplants to Velcade to Revlimid, have emerged in the last ten years (chipping away at, but not invalidating the Slate article's thesis). None is a cure, but taken together they've really demolished the "36 months" one doctor said would be the conventional wisdom on my survival when diagnosed. And doctors are still figuring out how to use them. For example, no one knows yet whether the effects of an allo transplant followed by Revlimid (likeI've having) will be greater that the sum of its parts...we'll find out when the trial closes.

I think the articles are useful particularly for newly diagnosed patients, who are simultaneously confronted with very gloomy, outdated survival statistics and a desperate hope for a "cure." Both are unrealistic in my opinion; the reality is a hard but potentially satisfying and rewarding management of the disease.

Why big health advances rarely involve new medicines.

By Darshak Sanghavi

Cancer as a Disease, Not a Death Sentence

By JANE E. BRODY

Transplant 2, Myeloma 1

noreply@blogger.com (Kevin) — Tue, 27 May 2008 21:01:00 +0000

Good news! My new cells (I would call them Kelly's, but at this point she ain't getting them back) are continuing to bludgeon away at the myeloma. Last week I got my m-spike (a measure of abnormal protein expressed by the cancer) back, and it had dropped to 0.39, from 0.69 (if i recall correctly) about a month ago, and about 1.1 when I was about to leave Seattle, and 2 point something when I was diagnosed. Destination zero, baby.

Most of that time, I wasn't on the Revlimid, so it's a sign that the immune system itself is giving the cancer a good thrashing (although the prednisone I'm on could help drop the myeloma as well, I think). I hope it's continuing now that I'm on steroids for the GVHD. In other good news, my blood counts which had bounced around a bit, are back to more-or-less normal, so the plan is to start Revlimid at a (reduced) 10mg dosage as soon as I run it by the clinical trial team in Seattle and get the new pills.

Almost as good news: I found a gas grill in decent shape somebody had thrown out.
Fixed up, grilled shrimp skewers last night. It worked wonderfully. I think I'll do portabellas tonight. Finding a free grill just as summer begins has given me a great feeling that the universe loves me. Ahhhhhhhh. Now if only I could have a beer while I grill...............

Immigration raid idiocy

noreply@blogger.com (Kevin) — Sat, 24 May 2008 05:42:00 +0000

The prednisone is keeping me up tonight, as well as being angry about the overly quick and disproportionate sentencing of illegal workers to prison time in Iowa. True, these workers did apparently commit "identity theft" in their quest earn a living, but someone paying into my social security account without me knowing it isn't the sort of crime that keeps me up at night. Unauthorized immigrants, feel free to use my identity to get jobs! Just not credit cards. A few thoughts:

1) There is no chance that the plant managers didn't know they were employing illegal workers. Doesn't mean I think they're bad people or that they should be thrown in jail--I'm just pointing out that the system is explicitly structured on plausible deniability.

2) A prediction: Unlike their workers, none of the managers will spend a night in prison, and fines to the company won't exceed 5% of the plant's 2007 revenue. I'm pretty certain on the first point, and I haven't run numbers on the second one, but I feel safe making that call. If I'm wrong on the first one, the first person to comment or email me gets a homemade derby pie in the mail. If I'm wrong on the second, you have to show the numbers to get a pie.

3). I'm pretty sure no other meatpacking plant execs are losing too much sleep over this (worker turnover might go up for a little bit, but no-one will be asking for raises for a looong time. The meat will keep coming.

4). Here's the only real question: will this particular plant reopen in a month or two with (unauthorized) Guatemalan and Mexican workers, in Iowa, or will it reopen in a month or two, with Guatemalan and Mexican workers, in Mexico?

So much for 'roid fueled blogging

noreply@blogger.com (Kevin) — Mon, 19 May 2008 17:55:00 +0000

The lack of blog posts recently, is, to my mind, a good thing. Time in front of the computer has been happily spent on either real work or fooling around with building websites.

The latter is something I started learning in Seattle, as a way to dust off the brain without diving back into work. It's focused mostly on trying to continue some of the work I once did in Bolivia in the new context of not being able to be sure when I'll be able to travel to places that required a beefy immune system. But more about that later.

As yet, my web efforts are pretty infantile (you can see a thoroughly underdeveloped work-in-progress here, but the range of free open-source solutions and the amount of guidance out there on the web is creatively inspiring.

So I guess I'm just laying this post down for the health record...but hopefully I'll get more inspired soon.

Mostly, I've been keeping my head down and being a good boy now that my immune system is being knocked down by steroids. Seeing a few friends in small batches, staying away from stores, running, cooking and eating well (but lots!). I'm scrupulously not going anywhere near the fire station, because I am not 100% certain that if I hear the dispatch tones drop that I would be able to resist.

Health wise, it has been both interesting and uninteresting over the past few weeks. The first bout of GVHD sucked. No appetite, no energy, worrying "What if this continues?"

As soon as I started the prednisone, bam, the world was better. In fact, too much better. Energy surges and crashes, trying to eat everything in the house, mild but marked mood swings.

The important thing was that the elevated liver enzymes that had worried my doctor immediately started to drop back toward normal. So Project Kevin Gets to Drink Beer Again is still on indefinite hiatus, but the Prednisone did the trick for the GVHD, which is a relief, as uncontrolled GVHD can be ugly.

I'm now tapering off the prednisone, but won't be 100% off the steroid until around October, which was a little disapointing, as I figured it would just be a little two week blast and then back to cruising. The good news is that my doctor here (in contrast to the doctors in Seattle, who had been more skeptical on the issue) thinks that assisting in teaching an undergrad class in the fall semester is a reasonable possibility, so I'm keeping that door open.

Fortunately,the wilder effects of the steroid faded. I will still try to eat anything standing still and don't sleep well, but the steroids aren't too bad so far.

As I began to taper down the prednisone last week, there were little flashes of GVHD- red skin and itchiness, mostly that I sort of enjoy. As the doctor says "They see a rash, we see myeloma cells getting killed"

Honestly, I haven't thought a whole lot about cancer the past couple of weeks; I'm hoping that the doctor and I will decide to jump back on the Revlimid tommorow, and I'm curious about what my m-spike is doing in it's absence (of course) but it hasn't been on my mind.

I did go to a myeloma support group meeting two weeks ago, which was a surprisingly nice experience (I say surprisingly because I generally don't have much patience for meetings and, it being the largest gathering of people I'd been in since the transplant, I was pretty much freaking out.) But I got to meet Len (who had an allo transplant and sometimes comments here and has his own blog on myeloma) and his wife, which was a treat, and a bunch of extremely nice myeloma patients who were much younger than I expected. Also, there was a guy who had an allo transplant something like two months ago and could probably lift me and throw me fifty feet, so I definitely won't be taking the bench press gold at the Myelolympics next year, even if that football player guy doesn't show. *Sigh* My lesson learned: don't rule out meetings.