"About the best it gets"

This, paraphrasing Dr. Dubois today, is not quite accurate -- but the sense of it was that the response he's seeing in me to the chemo is just about as good as it gets, esophagitis aside! He liked:

1. The tumor response (much of what's left is scar tissue). Mr. Potato Head is turning out to be a useful gauge, though not definitive.
2. My WBC (white blood cell) counts, 4.5 on a scale of 4.5 to 11 for normal people.
3. My tolerance for the chemo, which so far has been pretty close to "chemo? what chemo?" -- knock on wood. (Ouch, that didn't used to hurt as much when I had hair!). So far today, my only reaction is being slightly tired and -- not queasy, just ever so slightly "off."

So, we went out to dinner to celebrate. Yay!

Thanks for all the messages of good cheer! Special "above and beyond the call" thanks to MC and IR for compiling 4 CDs worth of "music to get you up and moving!!" And muchas besas to MAW for AM transport. The iPod worked champion. Katy took me home around 3:15, having had only 5 hours of toxic drip this time around. (A good name for a band, that: The Toxic Drip.)

After the next session, Dr. D will have another scan done to see if the rest of the Potato Head family is responding as well as the patriarch (potriarch?). Maybe I'll have tubers in place of tumors.

All 4 now, must...go... work... on Star Island... registrations. (We're registrars for our conference this year.)

XO to all,
D

Brief descents into fear, and back

Bugger it, I seem to have caught a cold. Now if I can just avoid giving it to K. and my fellow chemo recipients at Emerson tomorrow!

This evening I had a brief reprise of the fear I felt early on, and again when we learned the indolent NHL had transformed. I mean, this chemo stuff appears to be working great, which is, for the moment, encouraging. But still... do I dare hope for a "complete and durable remission"? The prognosis for NHL has a wide range of possible remissions, from mere months to decades; I haven't had the nerve to see what it might be for someone on the cusp of transforming to large-cell. With my siblings Pam and Tom, they went downhill fast when they went. Am I setting myself up for heartbreak by being upbeat and positive? Still, being u. and p. is supposed to be (depending on whom you listen to) the best state for restoring health. So I choose to return to u. & p. -- a feat which I never would have guessed myself able to achieve in such circumstances. I owe much of it to you all, family and friends, and of course the irrepressible & irresistable K.


PS -- SR (click yesterday's Comment link to see SR's comment)

Well, I'm not as cute as Alex, post-shedding.

And I've had to cut way back on coffee, yes. I let myself have one cafe au lait per day, and then it's steamed milk or hairball ... I mean herbal.. tea. Chocolate & alcohol likewise restricted, all in large part due to the flaming esophagus, not so much the chemo, although that too wants limited coffee.

I do like your ideas for "rebranding" NHL! Perhaps there is some way to combine My Nice Hawaii Life Diary and My Naughty Habits in Leather Diary... My Naughty Hawaiian Leather Diary? Which reminds me, I've got to get working on those vacation photos...

Mad at a March hair

We had gale force winds one day last week, and for most of the morning dog walk my head was entirely covered: knit cap, sunglasses, scarf, face mask. Which is a good thing in more than one way, because when I removed my cap, my hair did an imitation of a late-summer dandelion in the wind. Thus begins the hair loss process, confirmed daily by my pillow, bath towel, shower drain strainer, and my wardrobe of classy black jackets.

It's entirely on-schedule, leading me to hope the intended process of chemo is likewise going as planned. So far, the hair is mostly just thinning. Katy thinks the gray(-est) hair may be departing earliest.

Although I've been warned by folks who were previously chemo'd to expect global hair loss, so far the beard and outlying regions remain hirsuit. (If things change, Katy assures me of enhanced swimming speed. Who knows, maybe I can get back that Speedo modelling gig for AARP magazine.)

I suppose one advantage of going bald at my age is that the gray hair no longer advertises my advanced age. Nontheless, it's all just a little bit... um... dis-tressing. A creatively minded friend suggested I dress as a pirate, with authentic pirate wear such as a headscarf with skull and crossbones printed on it and an eyepatch. I suggested a parrot puppet on my shoulder, which could then make rude remarks that I myself would never make. Opportunities for piercings and (henna) tatoos abound.

Second round of chemo this Wednesday, the 26th. MA has kindly offered to drive me there and has also loaned me her early-model iPod. I will bring lunch, "coffee" and snacks, and K will pick me up when the turkey timer pops up mid-afternoon.

Apart from K and I taking turns having killer overnight sinus headaches with associated weird dreams*, we remain robust and, of course, grateful as heck for everyone's loving concern.

D

PS -- Happy B'day, JTW!!! Wish we wuz there or vice-versed.

* For instance, dreaming that you can't get to sleep because you have a killer sinus headache.

Ahhh

Yay, Protonix! I actually have something close to a normal swallowing system now. Feeling pretty close to normal in consequence, so today we both hit the gym for a workout. Not quite up to pre-vacation levels, but then it's been 3 weeks w/o workouts! The 'tater tumor continues to turn into a tater tot.

Katy, alas, came down with a monster headache for the latter half of this weekend. Seems to have yielded some ground now, but it hurt too bad to even talk and kept her up all Saturday night.

Sometimes it feels like illness is our new "ground state", with periodic reprieves.

Oh, yes -- and while I did *not* get to see Dr. Dubois Friday, my WBC (white blood cell) count was only just below the low limit for normal (non-chemo) folks. So I think that's a good thing. I feel totally normal. The doc said as long as I don't get too snugly with sick people, I don't have to worry about contagion much.

ai Chi or not Tai Chi?

Today's Mucusoidal Tissue Report is brought to you by Protonix. Protonix, Son of Prilosec, son of Zantac, goddess of proton pump inhibitors. (Not many goddesses of inhibitions out there, are there?) Yes. Protonix is my new med, a kind of Prilosec on steroids ... no, let not talk steroids, but you get the picture. It's supposed to reduce acidity in the stomach and esophagus, like, totally gangbusters. I await with flaming esophagus -- not to mention eyes, ears, nose, and throat, and I think the lower regions have their own conflagration going on. Seems improved. Let's hope so as last night was rough: me trying to sleep on my back on a slant results in snoring and noisy dreams, which disturbs, if not Katy then Alex who in turn wakes us.

More acupuncture today; was surprisingly sensitive to the needles & not relaxed or soothed as the other day. My philosophy on eastern medicine (based on Chi, as in Tai Chi) is that it's an abstract model, like any other descriptive philosophy, and all models have degrees of accuracy depending on what you try to do with them. Most of us still think of the atom as electrons orbiting a nucleus (if we think of atoms at all which I'm sure we all do). Even though that model is many decades obsolete, it works pretty well for basic chemistry. Works lousy for quantum mechanics, though. We'll see, though. I remain open to the possibility it may help. May also try some sort of Tai Chi, Qi Dong, sort of thing. Failing that, Ding Dongs.

Riding the wave

Here we are back in Harvard, Katy baking a cake to share with choir on Thursday, me blogging by the woodstove, trying hard to stay in Aloha. (Yes, I too, would happily sweep Susan's lanai if it meant we could camp on it!)

*Warning* Turns out this is going to be a long whine about medical complaints. A murmured "poor kid" and a skip to the finish is a rational response.

The first wave on this shore was chemotherapy #1 the day after landing. It was a long day, largely uneventful, with little or no immediate consequence. The tricky drug is the Rituxan (the latest & greatest for lymphoma), and they had to carefully ramp up the rate on that. At one point, I started feeling faint, called over the nurse, and my blood pressure had dropped to 60. "Over what?" Katy asked. "At that level, we don't bother with the other number," was the answer. So they quickly switched me to saline for an hour, then continued onward. The final round for the road was Adriamycin, a lovely red cardio toxin that there is a lifetime limit on. The 5-day, at-home component is Prednisone, a steroid that has *none* of the jollies that dexamethazone has for me. Felt fine. Next day we both did a normal-ish workout at the gym to no consequence.

The second wave was Katy got hit with a "flu" 2 days later, able to keep nothing down (or up). In a prime example of how easily medical communications can get screwed up, we ended up on Tamiflu for no good reason. Here's why: I called the doctor's office, described Katy's symptoms and asked, "So, is the the FLU everyone is getting?" and the nurse replied, "oh, yes." Then after checking the CDC website and finding that Tamiflu was possible, I ran that past the doc's. Our MDs gave the OK, our insurer gave the OK, and we got a therapeutic scrip for Katy and prophylactic one for me. (S.R, keep a civil tongue, you know medical terms.) Tamiflu makes you a bit queasy at first, but what the heck, we weren't tip-top anyway. Then a day or so later we took a closer look at the symptoms the influenza virus is supposed to have. Hmmm. NOT vomiting and diarrhea (isn't this a fun blog?), but respiratory stuff Katy didn't have. When light finally dawned on Marblehead, it was clear that Katy had a *gastrointestinal* virus ("flu") that is going around, which is what the nurse said "oh, yes" about. Which is NOT the virus that Tamiflu attacks. Oy.

The third and ongoing wave is this esophagitis, inflammation of the esophagus (throat down to stomach) that arose first in Maui after steroids gave me unstoppable hiccups that I had to go to bed with. The hiccups caused acid reflux overnight, which burned the esophagus. Now, I've had esophagitis before, and it was a nasty, progressive and long-lasting inflammation. This is showing every sign of being the same, getting progressively worse despite care, causing inflammation to cascade from my chest and throat to my face, ears, sinuses and eyes. There is practically nothing to treat it, and nearly everything aggravates it. Last time I landed in the ER on a weekend. This time, I'm trying acupuncture on an integrative therapies program from the hospital.

My big worry on this is that chemo is eventually supposed to, among other things, aggravate the mucus membranes of the mouth, throat, etc. anyway -- even without the reflux. If my inflammation response is anything like this, they'll have to give me morphine or something.

OK, the GOOD news is that Mr. Potato Head of Left Groin, Thighville is now Mr. Walnut. I see Dr. Dubois Friday, and I'm eager to see if this represents Great Happiness or simply Results to be Expected.

Sorry this post is not more decorative with Maui pictures and stuff. Can't get the furshlugginin pix out of my cell phone to my computer yet, despite appropriate technofiddling. Verizon appears to have made it deliberately difficult to get them out without sending them via the cell system. Can't imagine why. We've got lots of pix from the real camera and the underwater one, plus exciting videos. Someday.

Now the place smells of CAKE!! The Jeanne Weeks (and Hester Kay, it turns out) recipe with the fudgy icing variety, with Katy's special almond-flour treatment. Maybe cascades of saliva are the remedy for the flaming esophagus. (Hey, a new pen name for me -- the Flaming Esophagus.)

Today was busy with taxes and volunteering at HGRM in the AM, doing some actual paid work in the PM surveying trees in Framingham. More acupuncture tomorrow. We're on pins and needles here -- literally. (Wish it was litorally. Life's a beach.)

Thanks for sharing my whine.

Headed back home

Well, we floated here on a cloud of your love and support, and Maui did its part. We leave tonight at 10:15 PM after yet another glorious day, returning to keep most of you all company in the gloom and cold, willing to share tales and photos of warmth and aloha. And tales of Shave Ice, which I discovered I really enjoy.

love from D&K