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

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

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!

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.

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?"

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

"...Transplants and all that stuff"

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

I want to be Joe!

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...