Tag Archives: Phil

Compelling Explanations

So, it turns out Phil does not like being in this study. As you can see, my neutrophils decided to take a nosedive shortly after I started the Vidaza on 7/8. (This is for the study I got into, to tweak the post-transplant treatment of people with successful bone marrow transplants in order to try to reduce the risk of recurrence.) Less Phil is a pain in the tush, as it means more mask-wearing, obsessive hand-washing, and general persnicketiness–possibly for the whole year I’m in the study. The study also includes me giving myself shots of white blood cell boosting medicine (Sargramostim), but apparently Vidaza’s ‘phil-busting side effects trump Sargramostim’s ‘phil-boosting. Darn you, Sargramostim! Stand up and fight! Do it for Phil.

Phil does not like being in the study.

A bigger question, which I asked my doctor last week, was why a regimen that depresses my white cell count is boosting my immune response to any cancer cells that may still be lurking in my bone marrow.

As I expected, my doc at Hopkins had a compelling explanation. While my phils, which help fight bacteria and viruses, are taking a temporary pounding from the Vidaza, my lymphocytes, which are instrumental in going after cancer, are relatively unaffected. Meanwhile, the Vidaza turns on DNA in cancer cells which helps them to go ahead and DIE, already.

So, it’s clearly time to put my face mask on, thankfully accept my access to cutting-edge medical science, and suck up the fatigue and immunocompromised-ness. Because fatigue is a lot easier to treat than cancer.

P.S. Amusing line overheard in waiting room from a woman explaining to a friend that her case is very unusual: “So I asked, ‘What noise does a guinea pig make?'”

Let’s Talk Sky-High Medical Costs (and one thing that doesn’t suck about the Cheesecake Factory)

The New York Times recently had a great piece about how any given medical procedure in the U.S. almost always costs more–often many times more–than the same darn thing in other rich countries. This is probably the biggest reason why U.S. medical spending per person is maybe twice that of other rich countries, with worse health outcomes. I’ve been following this ever since I wrote an article about it, Sky High and Rising, for Sojourners magazine, where I work (normally, I mean–I’m out sick now).

The NYT article is great and you should read it right now (though Dean Baker points out, as he is wont to do, that it ignores the huge effects of medical patents). And I like that the article has space at the bottom for people to add their own responses to several related questions.

But I think most people were way, way off when they responded to the question of how it would affect them if doctors provided upfront price lists for procedures. I am all for transparency, but just having price information without other information could be worse than useless:

-For one thing, it could lead people to decide between doctors or between hospitals based on price without knowing how good the doctor is. You might either wind up choosing the cheapest, or using price as a proxy for quality and choosing a more expensive one, but you’re not making an informed choice.

-To get information about how good a doctor is, you can’t just go with patient satisfaction (which is based more on bedside manner) or even with how many patients get well–you’d have to factor in how sick that doctor’s patients were beforehand. (This is the kind of thing that the new Accountable Care Organizations, which pay for medical results rather than piled-on procedures, are taking a hard look at).

-On top of knowing how good various doctors were, you’d have to know how important a given procedure is, if you didn’t trust your doctor–presumably one goal of knowing the price is for you to decide whether the procedure is worth it for you at all.

-While it is a great idea for there to be some system-wide effort to see whether medical procedures are effective, it is a terrible idea for even well-informed consumers to take calculated risks. I’m a prime example. In 2005, I had a mild cough that wouldn’t go away, and I felt run down. As a healthy, nonsmoking person in my mid-30s who exercised regularly–and who was living on a nonprofit salary–if I’d had no health insurance, I might have deferred going to the doctor much longer than I did. Indeed, it two two or three doctor visits before they took a chest x-ray and determined that I did not have the expected walking pneumonia, but rather an apple-sized tumor next to my lungs. If it had taken me longer to go to the doctor, who knows whether they’d have been able to cure me? Thank God I did have health insurance with a reasonable copay (thanks also to Sojourners and Kaiser Permanente).

-I can personally verify that, if you get a serious illness, you are going to get way more information than you can handle. I am a smart person. I have an Ivy League doctoral degree. But when I get told I have cancer, it’s really hard for me to take in all the information the doctor is telling me about it, even when the doctor is excellent at communicating (and when I haven’t just started to flat-out cry).

So what do I think we should do, if not give everyone way more information than they can handle and then let them suffer the results? I think that the medical system should do the hard work and build up the expertise to develop standards of care, and follow them. I was inspired by this article in The New Yorker about how medicine should have the level of quality control that characterizes the Cheesecake Factory. The comparison is pretty ironic, as the Cheesecake Factory’s stomach-turningly insane portion sizes (a single entree, without drink or dessert, can have more than your whole day’s worth of calories and five times your day’s recommended saturated fat) are just the sort of thing that fuels the U.S. obesity epidemic. But hey, irony is everywhere.

I’m Normal! (ish)…

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Whoo hoo! As of yesterday, day 46 after my mini haplo transplant, all my blood counts are normal except for the red blood cells (which are apparently the last thing to come back). Here are my white counts (the red line is ‘phils, which they didn’t always give me a number for):

(The big spike a few days ago was when I got a minor sore throat). There is often a blood count dip around day 60, so I will look out for that in a couple weeks. But for now, I am psyched–even my liver enzymes are down into the normal range! I am still not allowed to go outside without a mask in the city, or floss, or be in crowds, or eat at buffets, but I am totally psyched to be making progress.

I’d just like to say that all this is way more encouraging than back right after the transplant, when the key to my daily blood-numbers printout literally told me to “panic.”

For example, here are some images from my printout way back on day 7 after transplant, in mid-April.

Actual standard language at the bottom of each blood counts printout I've got.

Actual standard language at the bottom of each labs printout.

As they’d just intentionally suppressed my old immune system to make way for the new one, near-zero white counts were normal. It was obviously cause for caution, but I really doubt panic would have helped. They should definitely reword that…

Welcome, Phil II!

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Congratulations, doctors and me–it’s a bouncing baby Phil!

I’m delighted to say that, in the last few days, there has been growing evidence that Phil II is starting to wake up and kick into gear. My immune system is still quite weak–the [neutro]Phils, or first line of defense against infection, are still less than half the normal range of 1500 to 7800 per cubic millimeter. The rest of my white count, which has not been stimulated by shots like Phil has, is functionally nonexistent. But all this is a heck of a lot better than the “less than 50” reading (which is the lowest reading available) I’d been getting for about two weeks, and it means that the donated marrow is probably waking up (testing in a couple weeks will show how much of the marrow is original flavor, and how much is the grafted donation).

I still have to wash my hands a lot, but the doctors have already let me off several of the precautionary medications (antifungal, antibiotic) that they had me on while I had little immune system. So long, Polly!

Don’t Have Phil, Just Polly. And Faith.

Readers of this blog are aware of my on-again, off-again relationship with my neutrophils (first-line disease-fighting white blood cells), which I collectively call Phil. If the transplant works as expected, I’ll wind up with a bloodstream teeming with Phil II (cells made from my donor sister’s bone marrow, which will, Lord willing, gobble up the malignant cells in my own bone marrow).

When I finish tapering off the antinausea drug, I’ll only be taking *15* medicines! Unless they start me on something else.

However, since the transplant process starts with serious suppression of my normal immune system, right now (at day 14 post-transplant) I’m in a period where neither Phil is anywhere to be seen–literally at undetectable levels, as the blood counts they do on me daily show. Hopefully, in a week or two my counts will start to come up, heralding the arrival of Phil II and all his platelet and hemoglobin friends. Right now (and for the past week or so) I’ve been getting platelet transfusions, washing my hands a LOT, and meditating up close and personal on “the assurance of things hoped for, and the conviction of things unseen.”

In the absence of Phil, the good folks at Johns Hopkins are offering me Polly to keep me company–well, really Poly. Polypharmacy, that is: the practice of giving people a whole lot of different medications (antifungals, antibiotics, anti-rejection drugs) at one time. I think I’m on literally 16 different medicines right now. The pharmacy folks gave me a handy chart of when to take them, which my caretaker sister reorganized into an even better chart, and we got this giant seven-day four-compartment-a-day pill case to keep them corralled.

Still and all, I’d rather have Phil. I hope and trust that those marrow cells are working away setting up housekeeping hidden within my bones, but seeing the numbers come up (and having an immune system) will be good.

Bit of a Dip

Well, I’d hoped that the fact that the Vidaza is kicking in (having its intended effect of decreasing malignant cells in my bone marrow) would overcome the fact that my blood counts normally dip in the middle of the month (because the side effect of Vidaza is to decrease blood counts). No dice–the dip, it is there:

You can see the recent dip at right, and its three predecessor dips stretched out to the left.

Phil (the purple line) and I were still on good enough terms that I could eat some lettuce yesterday, but I should probably err on the side of caution and have a salad-free weekend.

My 28-day Vidaza nadir–it’s the new Mr. Monthly.

Whoo Hoo!

Hey, blood count fans–great news! When I got tested today at Dr. Virginia’s, I found out my white blood count has tripled in the last week, and my neutrophil level gone up sevenfold. (Warm welcome back, Phil!)

Lookit those white counts climb–go, prayer team, go! Normal WBC is 3.5-10, and normal GRAN (neutrophils) are 1.2-8.

I’m no medical expert, but since Dr. Virginia told me that “hemotologic improvement” would be the sign the Vidaza was working, I’m going to go ahead and assume that means it is working to get me ready for transplant (by reducing the malignant cells in my bone marrow, preparatory to the donor bone marrow wiping out the stragglers with an immune response). Dr. Virginia said the Vidaza often took 3 to 6 months to kick in, and I am in the middle of cycle 4, so that’s right on time.

As an extra benefit, the white counts put my immune system back into the normal range, at least for now. Things tend to dip a little during the middle of my Vidaza cycle, but I’m going to take the opportunity to eat salad for the next few days, and to forego wearing a face mask during non-crowded times on the Metro.I’d like to thank God, all you folks praying for me, medical science, and all the great nurses at Dr. Virginia’s. Also, I’d like to thank my DNA–you are taking the Vidaza treatment to demethylate your little double-helixed heart out, and I really appreciate it.

I heard from the nurse transplant coordinator at Hopkins that they won’t do a bone marrow biopsy on me this month and that they’re likely to do two more months of Vidaza before transplant–I’ll find out more treatment timeline info when I have an appointment there at the end of the month.

Me *not* wearing a mask on my way home from Dr. Virginia’s today. Don’t worry, I’m still avoiding coughers.

Another open note for Phil

More counts today–platelets went up some more, which I hope is a sign the Vidaza is working, but my white blood cells only went up a little, when I’d hoped the extra week off Vidaza for Christmas would let them reverse their downward trend over the last few months. And my neutrophils were just the same as two weeks ago. Phil, you don’t really mean to spurn me during the holiday season, do you? Let’s start the new year off right!

However, I’m grateful for a great Christmas back home with my family. As an extra bonus, no one had a sniffle, so I only had to wear a face mask in church (Christmas Eve service = crowded service).

cherish each moment, even the ones that suck.

thoughts about surviving cancer. also, other things.