September 2: Big Goals and Half Marathons

I got an official "you're in remission" email from Dr. Strickland yesterday.

For all we know, then, I'm cured. But "for all we know" is a big phrase. Leukemia, at least most acute leukemias, are propagated by one mutated cell. It's entirely possible, even likely, that if I have one loose leukemic cell hiding out in my body somewhere, the disease could come back.

So, on Tuesday I have one more round of chemotherapy. I go in every morning at 8:00 am for four days. Then there's a week letting the chemo work, then a couple weeks for my blood to build back up. That pretty much fills September.

Then we work on the marrow transplant.

Big Goals and Half Marathons

As I said in the last blog post, some friends of mine are running a half marathon in Nashville in November. That's 13.1 miles.

This morning I went out walking and running for 25 minutes, and I decided I'm going to give my best shot at doing it with them. A little math says that I can do a half marathon in under three hours even if I only jog about 4 of the 13 miles.

The question, as far as that being a realistic goal, is how much I'll be able to exercise during the second round of chemo. It's a lighter round, but according to the doctor it will knock my white blood cell count down really low. That means it will also knock my red blood cell count down pretty low, and that's my oxygen transport system. It doesn't matter how good your lungs and muscles are if you don't have blood to carry oxygen from one to the other!

I should be recovered by early October. Will that be enough time?

There's no telling, so here's my plan.

I'm not going to register for the half marathon until this chemo is over, but otherwise I'm committed to it. I'll let you know how I'm doing on this blog.

In the meantime, the half marathon has the Leukemia and Lymphoma Society as its official charity partner, and I have a friend running who is raising money for them. I do not know how much she's raised, but let me put in a pitch for supporting her, which you can do at this website.

She's trying to raise $100 per mile. Even $1 per mile ($13.10 total) would help her do that, and if you sponsor her through her website, there's no mailing of checks involved or anything.

Oddly enough, the race is called the "I Run for the Party" race, and there's a big block party on a street with some honkytonks on it—Nashville's Broadway.

So it's not a "Race for the Cure" or anything, but, hey, if party-goers want to support the Leukemia and Lymphoma Society, I'm certainly all for it.

A Dare

Let me give you a dare.

I was released from the hospital about 3 weeks ago. While I was in the hospital I received 14 units of blood, and to this day I'm still below the normal range on my red blood cell and hemoglobin count, which are responsible for providing oxygen to my body.

As of today, I'm pretty sure I can't run further than a half mile straight, and even then it's a pretty slow jog.

I'm going to do a half marathon on November 12, hopefully in under 3 hours.

Here's a page with a list of half marathons in November in Indiana, Oklahoma, Arizona, California, Vermont, and Wisconsin. That web site also has training tips for doing a half marathon.

Anyone want to try to get ready for a half marathon by November with me, but in your own area?

If we include December, then we can add Texas and northern California to the list of locations. An internet search might find you one closer to you.

Remember, I'm making allowance for walking 2/3 of it.

Doing something like that just might change your life.

And if you're really a go-getter, and you want to make it a fundraising idea, then here's how you do that.

I did some searching on the internet, and as I would have guessed, most web sites think that going from the couch to a half marathon in 2 or 3 months, even if you walk 2/3 of it, is ridiculous. So keep that in mind, but I'm not retracting my challenge. I've been running throughout my 40's, so I should have the bone and muscle "infrastructure" for it.

You might want to get a physical. If you get the right doctor, she might say, "Hey, if you build up for this and walk a lot of it, you can do it"

Or she might not.

Let me throw in a plug for the documentary Fat, Sick, and Nearly Dead. It can be streamed for free on Netflix. Blockbuster and Amazon have it online, too, but not for free.

The idea of "rebooting" and living differently afterwards is one I highly recommend. My latest reboot was forced upon me by leukemia (one more benefit of leukemia), but it's not the only "reboot" I've done.

Most of us could use more reboots.

The American Cancer Society and Evil

Wow, it can be difficult to sort through all the things people recommend to me.

In the midst of researching some natural therapies people are pushing on me, I ran across an attack on the American Cancer Society. I was pretty offended, as cancer.org has some nice resources and good information on cancer.

With a little research, though, I have to say that nice information on a web site ought to cost less than $350 million, and the people who produce that web site ought not to be making over a million dollars a year.

I was very surprised that the ACS has two people on staff who make over a million dollars a year with benefits. It is also extremely hard--read impossible here because I had to rely on other web sites to find them--to get the Form 990 for the ACS, which most charitable organizations, especially large ones, provide. For example, go to preventcancer.org and look for their financial statements and Form 990. I'll bet 95% of you can find them in under 60 seconds.

Try that at cancer.org, which I'm not going to give a link to because my link would help their web site.

Others who have found the ACS Form 990 have reported that they have 2 people over a million dollars a year and many, many more over $100,000. Total salaries for their administrative people consume about 60% of what you give them.

Thus, while I think this link overstates the case, I am going to give the link because I think people need to avoid giving to them.

I know the Leukemia and Lymphoma Society only covers blood cancers, but I found their financial statements in about 10 seconds on their web site. They also had the easiest to read financials of anything I've seen today.

I already know them as an excellent organization. They give easy to follow stats on the increased survivability among leukemia and lymphoma patients over the last 30 years. They have done an amazing job, and I'm sure everyone reading this has heard of leukemia before they read my blog.

Of course, right? Everyone has!

Yeah, that's because of the Leukemia and Lymphoma Society and their hard work.

You would not believe the kind of work the doctors are going through to determine treatment for me. They're looking at multiple markers on cells, calling other doctors with experience at what works on those markers, and determining a treatment based on experience with those cells.

It's not simple. There are lymphocytes, monocytes, neutrophils, T-Cells, B-Cells, and NK-cells, which are "Natural Killer Cells." There are plasmacytoid dendritic cells, and all of those come in immature and mature forms. And then there's determining whether the problem is occurring in blood production in the bone marrow or after production in the blood itself.

The next step is to find out whether I have the FLT3 length mutation, then call the heads of a clinical study, and find out whether I can take their drug along with my chemo even if I don't the Acute Myeloid Leukemia markers, like the rest of the people in their study.

I wrote all that to make it sound complicated. Here, let me let it feel more complicated. Chances are, the original incorrect (or at least unconfirmed) diagnosis of Blastic Plasmacytoid Dendritic Cell Neoplasm was probably based on my testing positive for CD₄ and CD₅₆. But there's a lot more to consider. Take this case I read about, for example:

The tumor cells were positive for CD₄₅, CD₄ (weak), CD₅₆, CD₄₃, CD₆₈ (KP_-I, partly), and negative for B-cell and all other T-cell, NK-cell, and myeloid markers. Epstein-Barr Virus (EBV) was not detected with EBV-encoded small nuclear marker RNA (EBER) probe.

You get the point. These people are working hard, and their research is not being wasted. They are finding varied and amazingly precise defects and learning how to cure them.

Could they be better at preaching prevention? Oh, yeah. From what I can tell, advising patients to change their lifestyles to a healthier one is some sort of horrible crime against humanity.

But is the research worth it?

Yeah, it is. They're doing research and not paying multiple millions of dollars in six and seven-figure salaries like the American Cancer Society is. The Prevent Cancer Foundation, on the other hand, has a total salary of around $500,000 to handle their $7 million in donations. Those salaries are still stiff, with the top one at $290,000, but nothing like those of the ACS.

Keep in mind, though, that the Prevent Cancer Foundation only supports research towards preventing cancer. That's a great and important idea, but actually keeping cancer patients from dying is a good idea, too.

Okay, enough for today. This probably wasn't a very exciting post, but I wanted to take a good hard poke at the American Cancer Society for spending so little of their money on research and having such awful salary figures.