Tuesday, November 29, 2011

CNN Story

While I was in Washington DC a month ago, CNN interviewed me for their "Human Factor" segment - a guy running marathons with cancer. The story aired Tuesday morning, Nov 29, on their American Morning show.

It is available on CNN's blog pages: http://thechart.blogs.cnn.com/category/human-factor/, along with a short written story.

It is available without the written story here: http://www.cnn.com/video/#/video/health/2011/11/29/hf-don-wright-marathon.cnn.

It will probably air again at least once on Headline News, sometime during the week. Finally, a longer version is likely to be included in the Dr. Sanjay Gupta MD show, which airs at 6:30 am CST on Saturday and Sunday.

Friday, November 18, 2011

Probably Good News

After 48 cycles on the sweet little pill called pomalidomide, my cancer markers are about the same as last month. IgG is higher than I would like to see it, at 1280 mg/dL, but it didn't jump up again, it actually dropped slightly. M-spike stayed still at 1.1 g/dL. So the cancer still appears to be stable. Dr. LH did mention that stress (3 marathons in 3 weeks?) could contribute to increased IgG, and I know that I have a tooth that is starting to go bad, so those are reasons why IgG might be a little higher than expected.

Lambda light chains dropped a bit, too, while kappa light chains remained the same. I'm not sure that means anything, except it can't be bad.

Calcium has bounced around in recent months, and it's back up again. We discussed doing a skeletal survey, to check for bone lesions, but Dr. LH said that if the calcium is coming from bone lesions, it isn't likely to go down again next month. So we'll hold off for a month and see. She suggested that better hydration might improve the calcium numbers, and I think she's right - I know that I don't drink enough water. I need to figure out some easy way to fit proper hydration into my life so that it happens automatically. Yeah.

I haven't been blogging here much lately, because we three have been on the road a lot, but we're going to the ASH Conference in December and I hope to blog several times while there.

Some Current Test Results:

Test    Aug 25    Sep 22    Oct 19    Nov 17     Remarks
M-spike g/dL 1.1 1.0 1.1 1.1 \ Tumor marker
IgG mg/dL 1150 1020 1310 1280 / Tumor marker
Lambda mg/dL 2.25 2.49 2.75 2.12 L Free light chains
Calcium mg/dL 10.5 10.0 10.0 10.3 OK
Creatinine mg/dL 1.1 0.9 1.1 1.1 Kidney, OK
HGB g/dL 14.7 14.9 14.6 15.0 Hemoglobin, OK
RBC M/uL 4.08 4.09 4.07 4.18 Red cells, low
WBC K/uL 3.8 6.2 4.8 5.3 White cells, normal
ANC K/uL 1.40 2.60 2.30 1.70 Neutrophils, normal

Related Links:

My Myeloma     A discussion of my myeloma, not very technical.
My Treatment History Not technical.
My Test Charts Graphic displays of several key test results over time.
My Test Result Table Somewhat technical. Best with a wide browser window.
My Supplement Regimen With links to where I buy them.

There's oatmeal under there somewhere:

Saturday, November 5, 2011

CNN Video Piece

CNN has prepared a story about me and my 59 marathons since diagnosis, and were planning to air it this Tuesday morning. In case you were thinking of tuning in (I was!) it has been rescheduled for Tuesday morning Nov 15.

But don't count on it. News always comes first.

Wednesday, November 2, 2011

Senator Amy Klobuchar

I had a chance to meet Senator Amy Klobuchar yesterday. She's the best:

Tuesday, November 1, 2011

Oral Drug Parity, Part 2

HR 2746, the Cancer Coverage Parity Act of 2011, is intended to guarantee that private insurance will cover oral cancer medications on terms no less favorable than inpatient chemotherapy. Yesterday, as a blood cancer patient, I helped the IMF and the LLS bring this issue to five congressional offices, each time explaining the issues and helping the staffer to understand why we care about it. See yesterday's post.

Today we visited six more congressional offices, this time including the two Minnesota senators, for whom I'm an actual constituent:
  • Andy Taylor, Legislative Assistant to Congressman Michael T. McCaul (R-TX;
  • Brian Fauls, Deputy Chief of Staff for Congressman Dan Burton (R-IN);
  • Whitney Brown, MPH, ASPH Public Health Policy Fellow at the office of Senator Al Franken (D-MN);
  • Senator Amy J. Klobuchar (D-MN) and Andrew Hu, Legislative Assistant;
  • Katie Meyer, Legislative Assistant for Congressman Erik Paulsen (R-MN); and
  • Andrew Wankum, Legislative Assistant for Congressman Kevin Brady (R-TX).
Again, like yesterday, everyone was quite cordial, and most sounded quite positive on our issue. Some were chatty, some not, some had a little fun, and maybe talked about running too, some not. I have never been to Capitol Hill before, but I found that I really enjoyed this.

Why the bill should pass: It's bipartisan because cancer hits both sides of the aisle, it costs the government nothing because it is directed at private insurers, and it doesn't require insurers to cover cancer meds - it only requires parity if they do cover them. We hope that several of the congressmen will co-sponsor the bill.

Some insurers don't like the bill, mostly because it requires them to change something. They're obliged to be fair, poor babies.

Amy Klobuchar is something else. Of the staffers we saw in the various offices, there may have been just two or three who had a grasp of the issue before we arrived, but Senator Klobuchar knew all about it - even told us a funny story about it! There is no Senate sponsor yet, and I'm hoping that either she or Senator Al Franken will do that. I admit to being a big Klobuchar fan, for a long time, and I even got a hug.

If you noticed, ten of the congressmen and senators were men, but the one woman senator was the only one who showed up in person. Thank you Senator Klobuchar. To be honest, I think that's more about Senator Klobuchar than it is about gender, but feel free to disagree.

Thank you also, very much, to all of the staffers who met with us and took our message to your congressmen and senators.

Thanks to Christine Murphy of the IMF and George Dahlman of LLS, who did their jobs so competently, and Coles Hull, who guided us throughout, and thanks to Nancy Glick and Stephen Gendel, true professionals.

Earlier in the morning I was interviewed by CNN, preparing a piece about people who are responding to critical issues in their lives (or something like that). The snapshot below shows me with the CNN producer, and with the Potomac River in the background. The piece may air on CNN's American Morning show, Tuesday, November 8, which starts at 7 am Eastern time. Or maybe 6 am - that's what my guide says. More about this as I learn more.

UPDATE Nov 5:The CNN piece has been rescheduled to Tuesday Nov 15. Probably. More here.

Now we three are off to New York.