Still truckin'

Got chemo #5 Wednesday & Dr. Dubois said I'm doing "amazing" -- most R-CHOP patients are apparently kind of debilitated by now. Knock on wood, I'm feeling pretty fine. As I told Brother S. today,

So, I'm maybe down 20% on fitness, down 100% on hair (eyebrows and knees excepted), have to avoid the plague-ridden, am mentally a bit foggier than I would like, and have the occasional weirdness digestively (like hiccups, today),but other than that I'm fully functional.

Dr. D. will consult with Dr. F at Dana Farber w.r.t. my follow-on treatment, inasmuch as I fall in a funny zone between indolent and aggressive NHL on the conventional treatment grid. The question is, do I get "maintenance" Rituxan or not? He is leaning towards "not". In any event, they won't do anything more after the final chemo, June 18, for a couple of months -- not even the PET scan, because of the risk of false positives from PETs immediately after chemo. This will give my system time to recover somewhat

So I'm doing everything but working for a living, and am still trying to figure that one out. Thanks for all the inquiries, thoughts, greetings, comments (published and un-) and prayers,

D.

"Neutr'penia, Neutr'penia, what makes your damned head so hard?"

It's 9 days after the 4th treatment, the day for my usual checkup, and -- despite feeling pretty OK -- the WBCs are once again in the doldrums. (800, where "normal" begins at 4000). So, once again my ministry to the diseased masses of 3rd world countries must be postponed. Darn. I am also discouraged from eating raw fruit and vegetables, so I guess it's back to Hostess Snowballs.

I am getting heartily sick of being a useless lump. Nothing to do with the disease, mind you. I was sick of being a useless lump even before this, but the physical resemblance to one is getting stronger.

Accordingly, I am thinking of trying out for the role of another useless lump, the Pillsbury Doughboy, Poppin' Fresh. I mean, he's pale, white, pudgy, hairless, and his only line is "woo-hoo". Plus he's got this killer role in Ghostbusters. Perhaps I could write "Poppin' Fresh, The Musical." By the actuary charts, I've got 23 years left, and I don't want to die with "my music still in me," so maybe this is my big break. I could get this music the heck out of me.

A Week of Betterment, a Good Report & 4th Treatment

Things went uphill from my last post. Last weekend I joined our church retreat in Maine, enjoyed it thoroughly, and feel pretty robust again. Had choir rehearsal and a support meeting last night (Wednesday, chemo day). Today, the day after chemo, went jogging/walking, did some gardening. Also took 2 impromptu naps. Then more choir! (Have a memorial service Saturday then Music Sunday. Oof!)

In medical summary, I had a CT scan Monday, with Dr. D's review, pre-chemo, Wednesday. Scan is every bit as good as we could have hoped! Things that were centimeters before are millimeters now, spleen is reduced from 17 to 14 cm (a good thing), I still have no significant side effects from chemo, e.g. tingling in extremeties or shakiness in hands. We're still looking at finishing up in 2 more sessions -- mid-June, probably followed by a PET scan. PET scans display actual cancerous cells, but tend also to give false positives (that is, false reports of cancer). Possibly, if the formerly big node still harbors some bad guys, I'll get a course of radiation.

Dr. D once again says, "it doesn't go better than this". Still, he cautions against overoptimism, not in the least because chemo patients' immune systems do decline over treatment, and I am increasingly susceptible to infections, or may need immune-system stimulating drugs.

Again, the thing we are shooting for is to, in effect, knock the NHL back to where it was: indolent. If we get luckier, so much the better. Indolent is still incurable, technically. And large cells with bulky tumors (like mine was transforming to) have a poorer prognosis.

The hopeful news is that another, more likely-to-succeed idiopathic vaccine for indolent lymphoma is concluding its Phase III clinical trial this month --- early, that is, with hints that it may be because it has been shown so successful it would be unethical to delay it. Or that it's making people's ears fall off. Whether I would qualify for it now is a big question, even if it comes out soon.

Still, we'll rejoice in what we have. Dr. D. says that overall, I still don't look much like a sick person. (A hairless chihuahau, perhaps.) And I feel good.

thanks for reading!