Harvest Time

Ah, Autumn, "Bringin' in the Sheaves" and all that. Harvest Time! Time of apples, cider, pumpkins, and... stem cells!

Yes, tomorrow begins the harvest (we hope) here at Dana Farber, next to which we are camped out tonight (The Best Western Longwood). Because, as you know, these agricultural types are early risers -- so we have a 6:10 appointment.

First will come some planting: They are going to plant some tube-rs in my chest, of the Hickman variety. Then (pending results of the 6:10 AM blood draw) they will begin the harvest of stem cells, hooking me up to something which apparently makes noises something like a washing machine. I hope they use the "Delicates" cycle. Although being considered Hand-Washable might be fun. After which I will reportedly feel hung out to dry, but we'll see.

Tomorrow is K's birthday, as well, so ... hey, what fun for her! Fortunately, I am the romantic and she the pragmatist, and not the other way around, so modest celebration goes a long way with this marvelous gal.

This weekend, one of the possible Neupogen symptoms arose -- severe bone pain in hips -- leading to a sleepless night Friday. But, with the aid of some Percocet, Prednesone, and other Pills, plus a delightful dinner with friends, I was doing much better by Saturday evening. But, this is a good sign that the Neupogen is doing what it ought to do in my bone marrow, and so we have hopes of a fruitful (and therefore, we hope, faster) harvest. We are equipped with many things to view, read, or do while sitting, with much thanks to y'all who contributed such material.

Our fabulous and seemingly indefatigable friend Cindy has Alex for the evening and tomorrow, plus Tuesday and Wednesday days if indeed we must be here at D-F. Other fabulous friends will be delivering foodstuffs to our door for when we come limping back. Even if we don't have to go in, say, Wednesday, the break from cooking will be much appreciated. We tend to be pooped on several levels. K slept until 10:30 AM this morning, which I cannot recall her ever doing.

So -- off to see what they get on the hotel channels.

love,

D

Blood Test Day

Today (Thursday) is blood-test day, to see if my neutrophils are getting stimulated. Short story: not yet. In fact, I'm neutropenic with a WBC of about 400. Ho- hum. Apparently not too surprising given that Neutrogen (the stuff I self- or spouse-inject) takes a while to kick in and then does so quickly. It's day 7 since the Cytoxin saturnalia, with only 5 doses of Neutrogen to date, counting today. Possible downside is some schedule shuffling on Monday, and so maybe harvesting won't start until Tuesday. But then again, they might check my WBCs again on Sunday or something and find them fine.

But I feel great! I *am*, come to think of it, a bit tired today, but that's IT so far. No bone aches, no mouth sores, no diarrhea, none of it. So I had coffee with friend Barb instead of needing to be driven in by her, and have taken a nice noon nap.

I felt maybe 10% "off" on the weekend, post-Cytoxin, and a bit on Monday, too, but then I stacked a few wheelbarrows-full of firewood and felt much better. Tuesday night we went out dining at a French bistro with Cindy and Mike.

The self-injection, while a bit icky in concept, is a piece of cake. You just do it slowly and it's less painful than, say, accidentally poking yourself on a rose thorn.

Friend and "Celebrant" Cindy has been leading our effort to find a way to celebrate and ceremonialize the vital connection we feel to all of you supporters, and that is coming along nicely! News as it happens, on that front.

It looks like K and I will be able to do the much-anticipated recording of Christmas music by our choir! Hurray! K is fighting what may be a cold, :-( but so far appears to be winning. If you haven't seen the article & video on her work in flood prevention, email me and I'll send you a link.

It's a gorgeous day here. Get out and enjoy your day!

hugs all around,

D

Day in La-Z-Boy, all is (hic) well.

Friday was "mobilization day" for my stem cells, an all-day affair running from 7:30 AM to 6:30 PM. MAW kindly took the early call, and KW took me home.

It involved a megadose of Cytoxin -- one of my previous chemo drugs, but a 4x higher dose (6000 mg). This required other stuff (Mesna -- no relation to Mensa, to my disappointment) to protect my kidneys and bladder, a high dose of Benadryl (zzzzz) and then lots of saline to flush the toxins out. Peeing into a measuring device was the order of the day. Well buffered with antinausea drug (Emend) I feel fine, if a tad bloated from liquids. Indeed, this morning I weighed 14 lbs more than I did yesterday morning! Talk about your scale shock. But apparently within expectations.

So we went over to our wonderful friends, the T's, for dinner, and apart from a durable case of hiccups, I felt fine. The hiccups are of concern because last time around (in March) an overnight case of hiccups exacerbated my reflux and gave me a recurrence of an inflammation of the esophagus. Inflamation is especially to be avoided right now. A couple of calls to the on-call Doc resolved any concerns.

This AM, after resting up from a night frequently interrupted by hiccups, we went to the Airfield Cafe for a hearty brunch. We're currently indoors, hiding from a very tropical day courtesy of Hannah the hurricane. Every couple of hours I have to hold my breath to the gasping level to suppress the hiccups, but no biggie.

From here on out, the regimen involves self- (or spouse-) applied shots of Neupogen, only subcutaneous and with a really small needle, so should not be a big deal. We got trained using one of those hand-squeezy foam balls substituting for my skin. The Neupogen stimulates my bone marrow to put stem cells into my bloodstream, while the Cytoxin whacks the existing white blood cells, and provides further stimulus. So as my WBC's drop from the Cytoxin, they go up (with fresh new cells) from the Neupogen.

We've started mild precautions avoiding communicable disease and bacteria. Unfortunately, this means compromised time with currently goopy-nosed toddler godson H and his wonderful parents. :-( and avoiding dense indoor crowds. More intelligent indoor crowds are OK, as are get togethers with healthy friends, and going to public places (for now). Choir is a balancing act, as we REALLY want to be on the Holiday CD we're rehearsing for and recording on the 19th and 20th, but of course must avoid catching anything from our fellow, heartily exhaling choristers.

We have acquired the friend recommended wide-screen TV (floor model 42", 1080p Sharp, for $80 more than we intended to pay for 37", 768) for my recuperation and at long last hooked up the cable we use for Internet access to it. Zowie! We have bought or received a large passel of humorous DVDs for me in the hospital and at home later.

OK -- That's all from Lake Wobegon. Many thanks to all (expecially LB and SR, of late) for amusing correspondence and, from others, fabulously supportive visits, dinners, messages and offers. And of course, thanks to you for kindly following this monolog. I promise to be more witty when I have some.

hugs, D

By The Way -- I AM FINE!

Just a quick note to friends who might think that perhaps I'm not up for doing stuff:

I am currently in no way physically impaired, constrained, or curtailed in terms of doing stuff with people! I am just fine, and in good shape. In fact, not to be immodest, but... I often run 2.5 miles or more. I do 20-40 minutes cardio at the gym 2-3x /week, plus muscle conditioning, walk the dog 2 miles per day, can do 50 pushups in 2 sets, do 3 sets of 10 situps on an ab's machine set to 50 lbs, 3 sets of curl with 20-lb dumbells, etc. I can stay awake until 11 PM! I am allowed to drink and otherwise carouse.

SO --- if there's something you'd like to do with us, bring it on! Katy is sometimes pooped on weeknights, but not always. Planning is not our long shot, so spur-of-the-moment is good!

cheers,

Dave

A Day of Fun at Dana Farber

So... Tuesday the 19th we had our day with the fun folk at Dana Farber, with various tests, scans, signing of waivers, and other recreations preparatory to the stem-cell transplant. Also, we had our information session with K., the caffeinated coordinator, and a Q&A / signing session with Dr. F. The most important fact to emerge from that meeting was that we can go back to Maui in February, if we like!

Some of the rides at D-F yesterday were:

1. Dracula's Delight (drawing of about 40 gallons of blood through a needle the diameter of Bush's brain)
2. The Curie-Muir Experience (time-exposures of the heart after radioactivating my blood)
3. The Big Wind (breathing tests, which I *ahem* aced, at 102-105% of predicted)
4. No, That's My Nipple (standard cardio exam with chest electrodes)
5. The Pirate's Chest (well, mine, actually, x-rayed. It's darned hard to look piratical with no chest hair.)

I attribute my gold medal in #3 to decades of practice at breathing, inspired by my Mom's doctor at my birth. (Speaking of 'spiring: the respiration thingy's software, written in the UK, at one point popped up a dialog box listing an action to be taken "until the patient completely expires." Completely, mind you. No halfway measures for those Brits!)

KW, my long-suffering spouse, took notes as K, the helpful but clearly caffeinated coordinator, filled us in (between tests) with the details. She also made life a bit easier with some changes to what was initially expected, like the Hickman line going in later. And like yes, I CAN have coffee! (But not through the Hickman line.)

I've posted the calendar as we currently know it here. The basics are: two weeks of stem cell mobilization starting Sept. 5, admission on Sept. 23, release to home on Oct. 14 (3 weeks), where I can do most things to the degree I have the energy, including driving, but not go into public places or do stupid unhygienic things. I was advised that some released patients have found reading more than 3 column-inches of newspaper demanding enough to require a nap. Pah! I shall be climbing New Hampster's 4000-footers*, as befits a gold-winning heavy breather such as myself.

In the hospital (Brigham and Women's) it turns out we will have a fairly standard room (positive pressure, door closed), but single occupancy, with various amenities including an exercise bike, my own laptop, and wi-fi. A hot tub, masseuse, wet bar, lap pool, and valet are apparently not included. They are encouraging me to wear clothes, too.

Visitors (12 years old and over with NO illnesses) are welcome at the hospital, but must be scrubbed, wrapped in a ZipLoc bag, wear a propeller beanie, and stuff corks in their nostrils. (Because it amuses me.) Katy is currently hoping to work most mornings and visit most afternoons and early evenings. Our friends D&D, who have been through this, characterized KW's proposed schedule as "gut-busting for a 20-year old!" so we'll see. Her work has been most accommodating and KW has arranged family leave under the MA family leave act.

KW and I are OK, depending on the day, phase of the moon, etc. Yesterday was tougher on KW than me. D&D reminded us that we are entitled to an unlimited number of melt-downs. So I am going to take my ice cream out into the sun. Enough for one day.

* By "footers" I mean "inchers"

OK to go

I met with Dr. D. today, who seconded the medically conservative philosophy of Dr. F. , to go ahead with the stem cell transplant. Katy attended telephonically in order to save sick time for later. With Dr. D's permission, I also recorded it, which I wish I had thought of earlier.

In summary: This harrowing procedure (and I'm sure brother S. concurs with that description) is a kind of prize for having responded to and tolerated the first chemo. It holds promise of eradicating any remaining few cells of the aggressive type. We could wait and see, but if it came back, I'd be older and would have to go through the entire process again if we did that, starting with the 18 weeks of chemo. If we do it now, I'm in good health and we know we have the insurance necessary It may even keep the low-level disease at bay or "cure" it.

That said, I am pretty overwhelmed by the decision, right now. And yet, oddly nonchalant. It's a quite surreal experience. I have many deep, philosophical thoughts to share someday, but at the moment I am focused on funny movies, chocolate, my marvelous wife, and good friends and family such as yourself.

love,
D

Bad Gnus, Good Gnus

Eddie Izzard (our favorite comedian), as part of his Noah's Ark routine, mimes an evil giraffe. ("I shall eat all the leaves so the other giraffes shall have none.") I am reminded of that routine now that I have studied bad gnus and good gnus in their natural habitat and concluded that they always come in pairs. Perhaps Noah had something to do with that; or one of his less competent sons. ("Did Dad say one male and one female or one good and one bad? Hey, whatever.")

So far, the good gnus are bigger than the bad gnus, although it's sometimes hard to tell them apart.

Good gnus: I sailed through chemo, and my post-chemo scan was "fantastic". All lymph nodes are appropriately small – below the size where any additional scans (like PET, which is a cancer-sensitive test) would do any good.

Bad gnus: Our local hematologist/oncologist, Dr. D. (whom we really, really like) had until recently only mentioned frequent CT scans, and maybe some radiation, as the post-chemo follow-up. Our Dana-Farber lymphoma guru (Dr. F.), however, recommends that we jump a final hurdle – about 400 feet high – in order to consolidate our excellent gains in chemo. That hurdle is an autologous stem-cell transplant, along similar (but not identical) lines as brother S received last year. Autologous means I use my own stem cells.


Good gnus: The reason Dr. F. recommends this transplant is that it offers a better than 50% chance of an actual CURE* of at least the more aggressive, large-cell disease, and possibly of the low-grade (indolent) disease I started with! Yee-HAH! (* A cure is a "complete and durable remission.") I have personal knowledge of someone who had this treatment who has been lymphoma-free for at least ten years. Without it, Dr. F. give us 50% odds of the aggressive disease returning.

Enough with the gnus already, I'm just going to write this up. So… we're not quite sure why this wasn't mentioned to us earlier, so we're feeling a bit blind-sided. It may have to do with the fact that my particular case doesn't fall into any neat category where there are data appropriate to use with me. The only research on transformed indolent lymphoma is quite old, and involved older and sicker people than me. (So don't go reading up on it! I'm not. It's scary enough without extraneous inapplicable research.) Also, Dr. F. is quite conservative in his treatment choices, tending to place people in a higher risk category where this is any doubt, whereas Dr. D. has been focused on my unusually good condition and response. Dr. D. is also responsible for a very broad range of blood cancers, whereas Dr. F. is a specialist. It's ok. In any event, Dr. D. told us before our appointment with Dr. F that I was capable of handling anything they threw at me. So we are postponing our previously scheduled complete nervous breakdown for a while. Too bad, we were so looking forward to it.

If we go ahead with this – and it seems like we should – it will mean about 4-5 weeks of unpleasantness: One week of outpatient work to mobilize and acquire the troops (stem cells) from my bloodstream, a bit of a rest, then 3 weeks in the hospital (Brigham and Women's most likely, with oversight from Dana Farber). There they put me in a special room, pump all the air out, and watch me explode. It's good training for the technicians.

No, they will put me in a special room, give me fantastic doses of toxic chemicals until my bone marrow says, "Oh, what the fuck," and expires, taking my immune system with it. I am then at risk to any microbe that happens to walk along. They then on day 7 give me my stem cells back, which set up shop in the old location (my bone marrow – "location, location, location") and start cranking up the immune system again, hopefully without any bad gnus among the population. After the requisite number of fevers, mouth sores, bouts of diarrhea, nausea, and other minor tortures, the staff decides that I am NOT going to confess to the Gardner Museum thefts and sends me home.

It's all quite unpleasant, but on the other hand, also incredibly boring and terrifying. If we go ahead, at least it is a well-trodden path (B&W does 150 a year) with a finite duration, handled by top people.

Katy has already found a place she can stay with friends near work, and then take the train in to Boston to visit me. The friends can also take Alex for a while. Katy has begged off all church committees, and I am pressing her to schedule many "girls' nights out".

Nothing has been put in action, yet, however. I have a meeting with Dr. D. on Friday where that will probably happen. We might get another opinion just to confuse us while nonetheless proceeding towards the stem-cell transplant.

OK, I'm tired of writing and thinking. Must go find some way to vacuum my brain cells out.

Cheers,

Dave