Background to Joy

As the totally cool, clued-in reader knows from reading our site at CaringBridge (www.caringbridge.org/visit/davekaty), the universe has made a U turn for us. I am now home -- 2 days early -- and loving it. 2 days early makes me a superstah.

Less stated is that it makes Katy a Megastah. With this news, she has needed to get the house ready, drive to pick up Rx and palliatives, pick up the dog, ensure that her helpful brother Steve is not entirely neglected and has tasks to fill his willing hands, come to the hospital, talk to the PAs, help get my stuff home, sorted, put it away; organize my meds by day and hour, sanitize bathrooms, kitchen, handle communications with folks, clean dishes, do laundry, worry about separation of stuff between me and the rest of the world, tidy the house, and more.

Consequently, she is at the end of her rope. I worry (and have worried) that my early return and heavy-duty proscriptions against nearly any kind of useful work just make it too much. She is at the end of her rope, and I have no rope. {lus any independent action on my part just makes more work, reasonably enough, in that she has been saddled with caregiving.

She is doing a marvelous job, and of course I love her giant loads. Wonderful friends make open-ended and generous offers of help. There is no going back to the hospital (not that I could bear that), and it is wonderful to be home. The thought of nearly anything generous, loving, beautiful or comforting pretty much puts me in tears; the thought of most anything else makes me queasie. So I may seek help in mindfulness or mindlessness, but I need to be out of my mind right now.

stream of bloggishness

AM, PM, big difference, why. Why does PM get to screw up AM. Pills in the morning, pills in the evening, pills when the sun is gone. Maybe oh, a dozen today? Plus god knows what thru the damndamndamndamndamndamndamndamn IV lines. Tonight mild hope of new headache drug, thwarted by simultaneous explosive puke and diarrhea. Almost had it fixd by combo of surgical mask and humid air duct, but not enough. Air here is stunningly dry. Breath through your mouth for a moment and you need a drink.

However, thanks to chemo taste buds, all sweetened stuff tasts like excessively sweet paste. Water bears resemblance to strichnine. How is it that they can use dryer lint to make Italian Ice? Food has no appeal at this point. If I even look at the menu I feel ill -- and it's not that bad a menu.

Coughed now as water made me choke, which pounded my nearly-continous headache untreatable by any means known to medicine. Headache, of course made me briefly nauseous.

DIdnt hold a candle to the preceding event of retching out meds. Told the staff I want no more pills tonight.

Then IV pump began its escalation pattern of complaint: beep beep BEEP FUCKING BEEP DO YOU HEAR ME! After 3 iterations staff decided to disconnect me. O Frabjous night, you fucking bite!

Have adjusted HVAC for the quadrillionth time. Apparently it achieves proper temperature at the high end by blowing cold air (on the patient) until the trip point is randomly reached. It then follows some sort of hysteresis curve following the law of Mandelbrot. There is no OFF on the fiendish thing. And the space between these two characters:>< translates into the difference between ol-man-winter and summer in calcutta.

fuck it all, think I might go puke again. Just to save time later. And it would be a valuable way to lose water weight. I am now carrying 2.5 GALLONS of water weight. My fingers are pudgu and stiff, my legs and feet likewise, and my genitals do not warrant description. So, yes, one recurring theme is LASIX which results in frequent appalling visits to genitals. So, ready to puke yet? Join me. We'll make it a traditional Roman event in the Olympics.

Sunday, sunday

Today gradually became a much better day than heretofore, as chemo finished up overnight. Got a couple of bags of red cells today, which also improved things. I'm still connected to bags o' stuff hanging from a tree, sigh, but that's kind of post-chemo protective stuff. The blue tubing, which carries the chemo, should be no more. No more bags labeled as biohazardous toxic radioactive sludge feeding into my body. Oy.

Was Skyped into church today, all thanks be to Bob, which was fun. Couldn't quite hear the sermon clearly, but did hear the choir do a nice job. Also Skyped with godson H and family, and with Lydia R, who is coming tomorrow in place of Katy so Katy can get a rest.

The food is not bad, although highly variable in quantity. Way, 'way better than "hospital food" as I remember it. I have a small stash of brownie bites, York peppermint patties, and ginger ale in the mini fridge.

We continue to be grateful for all the communications and visits, and remembering all that good will often keeps me going. Today Katy and I did silly dances and geeky things like calculating the floor space, outside in the nurses' area. I even had a brief moment of not being tied to the tree. Tomorrow I hope to make a more energetic attempt at the exercycle.

Love to all,

Dave

Blueghh Friday

5 AM, Friday

Never has one man peed so much without a preceding beer binge. With this Hickman line thing in place, and its bifurcated nipples, fed by yet more birfurcations, they can pour stuff into me like tributaries into the Yellow River. I am supposed to be practicing mindfulness but instead am practicing bladderfulness.

They seem to have found a solution to the blinding sinus headaches of the past two nights, in which they hit me with Tylenol and Benadryl before giving me the anti-nausea drug that precedes the actual chemo. Also, took two decongestants before bedtime. Not actively puking, but appetite has definitely taken a hit and constantly feel kind of “urpy”, with periodic hiccups, so far controllable. Oh, no, wait... OK, puking *is* on the agenda this morning. Ativan, my friend, helps put a stop to that.

It has been a great comfort to be able to communicate with people in so many ways, learning of all of your thoughts and prayers via CaringBridge, but also being part of some of your normal lives by audio and video. Skype is working gangbusters, and with the help of Bob G., Katy and I listened to and watched choir practice, visiting it live by video from my room.

Katy has been visiting every afternoon and evening, which is great. Today she’s going to split her day between work in the AM and visiting in the PM. Friends from church are planning to visit today, as well.

As I knew going into this, it’s impossible to really anticipate how one is going to feel, even knowing what others say. The body has a way of forgetting just how lousy things can feel. This is probably a good thing. Right now, I feel kinda blah, bordering on queasy but not quite there, and increasing tender in one particular evacuative mechanism. But, as it is said, “cheer up, things will get worse.”

So far, haven’t made much of a dent in the video collection, but that may change. OK, must pee and then try to squeeze in some sleep before the next pee makes its demands.

Whoopee,

Dave

Wednesday's blog, a day late.

Somehow, this text didn't get up on the blog on Wednesday, but did on CaringBridge,

Hi, folks! Well – never have two people floated to a hospital stay buoyed by so many heartfelt good wishes and prayers! It is really wonderful to hear from you all, and makes me think that it might be possible to get through 3 weeks here without putting my head through the window glass. (Something I contemplated last night.) Thank you all! And the Brigham’s glass company thanks you.

I am up on the 6th floor, pod C, room 56, and the room phone number is 617-732-4175. I also have my cell on most of the time, and I will be on Skype as well. My Skype name is dave.katy.alex, and I have a webcam (you don’t need one).

If you want to visit, right now the best thing to do first is check with Katy (or me) by email or phone. Mostly, just to make sure that I’m OK to receive visitors and that no more than 3 people arrive at the same time.

So… OK, we were told to show up Tuesday around 7PM, and did, but it turns out the cleaning person preparing the room decided to take a dinner break. It was 8:30 before we got the room. Then the night nurse (Amanda) was quite busy and so we didn’t get to unpack and get my lessons until 10-11. Neither of us made it to bed before 12:30 AM. I gradually acquired a flaming sinus headache that did not subside until about 7AM after some oxycodone and a hot shower. (N.B. bring your own OTC drugs to the hospital and just don’t ask, don’t tell.) Did some meditation, decided that boxer shorts were the garb of the day, comfy and practical, and had my interviews / lesson with the mindfulness meditation clinical study that I’m signed on for. Despite lack of sleep, feel pretty good this AM. The room does have a stunning view of the HVAC system, but beyond that I can see hills with trees and the radio towers in Needham, I think.

This morning around 11 they started my chemo, and so far so good. I ordered a sirloin burger, fries, and dessert, and it all went down just fine. Oddly, the Pepsi tastes a bit medicinal! Katy had a chance to sleep in, yahoo! And go to the gym! I ordered 2 desserts at lunch and she can have one. They recently moved to a “room service” approach to food, with a nice menu, and 45 minutes delivery, between 7AM and 9PM. This is nice.

In short (and in shorts), at this noon hour all is quite well.

Hugs and/or kisses as appropriate,
D

A Full Week

Hodge-podge of thoughts in roughly reverse chron order:

Tonight's my last night at home for 3 weeks. Katy is pooped from not getting to bed early enough last night. Ditto for me. Alex is staying with dear friends with a playful golden. I made it through the day in good spirits. Had an emotional metdown tonight, which is fortunately unusual. Couldn't see Cindy and Mike and Henry (godson) due to virus, which is depressing. Well, saw them, but through a screened window, darkly. Didn't have energy left to see the T's and their kids who are all very dear to us. Boiling clothes to wear in the hospital (well, washing in hot, which washer is NOT used to), and bagging them.

Got Skype to work this weekend, and had video exchange with old friend Jay. Very cool! Surprised at better-than-telephone audio quality. Anyone skyped, leave a comment or drop me an email with your Skype address.

Weekend was full and beautiful, with our choir recording xmas music Friday and Saturday, dinner with good friends from church on Saturday pulled me out of a sudden morbidity. We put on an open house w. ice cream for local supporters who could make it, and that was utterly delightful.

The week post-harvest was OK, although Tuesday's dressing change at CHO was a big head-scratcher as there had been continuous bleeding. I suggested perhaps a shortage of platelets, but the suggestion didn't seem to go anywhere and I came home with a new dressing anyway.

Thursday was a major test of patience, etc. Hickman line was still leaking a little blood, so called D-F nurse who said "come in". So drove myself in expecting nothing worse than a bit of stitching or something. So she changed dressing, had me road-test it, and indeed it still leaked. I inquired if platelets might be involved. After a bit of head-scratching, she ran platelets, and yes, I was down a quart. So platelets ordered, expected within 15 minutes. An hour later, I'm seated ready for platelets, trying to cheer up a tough case seated next to me from Maine. Another week or so goes by there, and they tell me they need to type my blood and do a clot test before the platelet people will release any. O...kay... They move me to another chair, which seems to promise progress. A month goes by, and by now my inner toddler is having a fit. I put a sticky on the chair saying "gone for walk. Here's my cell number..." I go outside and pace in a skimpy patch of sunlight for a half hour. Meanwhile, realize, Katy is biting her nails and slightly freaking out. I insist she not come in, as all seems under control. So about three seasons go by, and I finally get my bag o' platelets. 5 minutes later, as I am Om'ing out in my meditation, I notice odd scratchings in my throat. Nurse comes over, inquires further, shuts off platelets, and now I am surrounded by doctors, nurses, PA's, phlebotomists, bootblacks, tinkers, and sailors a tad concerned because I was having an allergic reaction to the platelets. No biggie, mind you, except for the pustules forming in my mouth and on my face and eyes. THIS in turn requires infusion of a bag of antihistamine, zantac, and tylenol, which in turn means that I conk out for about an hour. Head nurse and I have a discussion about my driving myself home, which I absolutely insist on and promise I will make sure I am competent. After various checks of my transmission oil, temperature, and tire pressure, they release me to my own devices, which include another call to Katy (on her way now to our last pre-CD rehearsal), a meal, and a cup of iced coffee of the Homer Simpson Fat Boy Movie size. So I drive to choir fiercely alert, and squeeze in 45 minutes of it. TOtal elapsed time at the hospital to fix leakyHickman, 12:30 PM to 7:45PM.

The good news is, it worked, and the Hickman has been fine ever since. NOrmally, they would have done the Hickman earlier than the harvest, so normally, the patient would not be low on platelets. Nontheless, I am glad I did not have to go in separately for the Hickman and then have to maintain it for a week until the harvest. It is a bit odd having four nipples altogether, now, two of which are tucked into an Ace bandage around my chest. Katy flushes the two artificial ones once a day, which puts a strange taste in my nose via the bloodstream. Ick.

Tomorrow, as someone more clever than I once observed, is another day.

Oh, yeah -- I will be firing up a CaringBridge site: www.caringbridge.org/visit/davekaty

Not sure yet what protocol will be w.r.t. visitors, so for now check with Katy if you plan to visit. (And I will be pleased as punch if you do.)

Bringin' In the Sheaves, and sheaves, and sheaves...

To come right to the point, thereby startling my usual readers, yesterday they needed 2 million stem cells from me, and they got TEN million! So... "stem cells for everyone!" Beats me what the heck we're going to do with the excess, and I wish they had been able to tell us "go home" after getting oh, say, 3 times what's needed. The nurses did say they were 99% sure we were going to be done, based on (ick alert to the squeamish) the creamy nature of the stem cells collected.

Now, no more neupogen, got an immune system (although we still must avoid getting colds in this last week), but apart from a quick visit Katy takes me on tomorrow, WE ARE DONE with medicos and hospitals and special drugs until I go in, a week from today.

Today we are both simply fried, however. We took a nice walk to see the "Big Bugs" exhibit at NEWFS, and that will do for the day.

Friends Lydia and Barbara delivered fantastic, comforting healthy meals yesterday and today, and sister-in-law M is covering us tomorrow. Which is wonderful, because we have about enough energy to turn on an appliance, as far as cooking is concerned.

Cindy remarked that yesterday there was a "perfect harvest moon" which undoubtedly accounts for the stem-cell surplus.

So go shine on yerself, and we're gonna eat and nap.

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

"Feeling MUCH better now."

The late John Aston, who played Gomez on TV's Adams Family, also played a character on TV's Night Court. This character had recently been released from a mental hospital and was disturbingly cheerful and unflappable - while still being weird. One of his best lines, after describing some strange event in his past, was to say (with a toothy grin), "But I'm feeling MUCH better, now."

That's kind of how we feel -- and probably appear -- at this point. We went to Star after giving ourselves some decompression time (thereby confusing both the people who thought we were coming, and those who had heard that we weren't), with the promise to ourselves to leave early if it didn't work out. In the end, it did work out, although I still found myself pretty mercurial and hypersensitive throughout much of the week. I did a lot of napping, whether from exhaustion, depression, or pique, I suppose it matters not. A week on Star is a bit of a social compression chamber at the best of times, and this time was no exception, but on the whole we got a lot of consideration and many heartfelt hugs and love from old friends. The weather was great all week, the water was an unheard-of 69 degrees so we could go swimming, and the food was increasingly good. We avoided most opportunities to get ticked off at people, and in the end even joined in the silly Island traditions we roll our eyes at. Nontheless, I think at this point some folks are tiptoing around these precariously balanced mental patients.

So -- many thanks to friends and relations for your love, comments, emails, and the like. It really does make a big difference.

love,
D

3 weeks post chemo

OK, so here we are. We had a "final" visit with Dr. D. with pretty much the same content as before, quite hopeful, etc. CT scan in mid-July, then every six to eight weeks. Maybe a PET scan at some point, maybe radiation, maybe Rituxan "maintenance" -- but probably not.



Oddly, it is harder to be in this phase of things than in treatment. All the anger, grief, etc. of the past few years has come home to roost. Our presumed "vacation" this week on Star Island is irrecoverably contaminated with ... well, a lot of shit. Too much to describe here. At the moment, we're not going, but that decision changes hourly. It wouldn't be as bad as it is if we had had so-called normal lives, but we haven't. It's a mess of contradictions and paradox. This week long "conference" has been a community of ours for 20 years. We volunteered to do the thankless job of being registrars, not knowing I'd have chemo, and not knowing what a shit job it is. Plus, last year, Star Island almost went broke through mismanagement, and there are a lot of hard feelings about that. So there are a lot of people we're unhappy with, and who are unhappy with us; and we have a lot of emotional baggage just from non-Star issues alone. So we're damned if we go, and damned if we don't, as far as I can tell. And yet with just a slight mental shift this would all be nothing at all. And yet I can't make that shift. I don't want to spend a week processing emotional baggage, but it seems there is no alternative. I thought we were going to begin our turnaround, a fresh start, new beginnings, etc. but I guess not. Life seems to have gone bad. I thought we were doing well, but I guess I'm wrong. I can't figure out how life is ever going to be worthwhile, and wonder why I bother trying to be and think healthy. It really seems like a waste of money and energy if we are destined for grief. (Translate: can't figure our way out of this.)



PS -- True believers of all sorts, please, please, please do not write to me of your beliefs. That will only piss me off, and I'm already ready to put babies on spikes for entertainment.

Final chemo!

(blog at www.mynhldiary.blogspot.com)

Yesterday (Wednesday, 6-18) I had my last chemo session! The session, as usual, was totally uneventful. I offered to demonstrate a set of 20 pushups by the front desk to show them how well I have done by them, but K. felt that might be over the top. I have felt fine today.

Dr. D. reiterated that he found my response/tolerance "amazing," in that most people look (and are) pretty debilitated by this point in R-CHOP.

Perhaps even more encouraging, when I deliberately introduced the phrase "when it comes back" into discussions of the future, he said, "Do me a favor. Let's say, 'IF it comes back.'" So, I'm not letting my hopes rise too far, inasmuch as the statistics say it probably *will* come back, but I think we're warranted in taking that statement as a hopeful sign. He agreed that my case does not fall into any neat diagnostic categories of NHL at present, which to my mind kind of makes looking at statistics pointless (and needlessly depressing).

I'm expecting this upcoming "nadir" to be deeper than before, but I'm prepared to take as many naps as necessary, and am also armed with precautionary antibiotics. Yesterday's WBC was 3700, still below the normal person's minimum of 4000, but not so bad.

From here, they give me a "handful of months" for my immune system to recover, followed (perhaps) by a PET scan, and for sure by CT scans, perhaps every 6-8 weeks! I expect to glow in the dark, soon. The PET scans are notorious for false positives, especially after chemo, so Dr. D. is going to consult with Dr. F at Dana-Farber on that. Also, on my case in general since I do not fall neatly into either the indolent or mixed-cell diagnosis at this point.

Whatever.

K is doing well, but a bit frayed around the edges -- not only from concern about me, but she's picked up nearly all of the Star Island registrar's work that we're supposed to be sharing... in addition to extra church responsibilities that have cropped up. Oh, well. Neither of us knew I'd be in for chemo when we signed up as registrars. I continue to do what I can to at least take care of home stuff, and will be picking up the Star work for a while, and getting increasingly diligent about finding some work.

As usual, thanks for all your support and concern, and for following this blog!

love,
D

Same old np

Got the usual "nadir" blood test & exam today, no surprises.

Have been a bit more tired than usual this week, and tired earlier than usual (e.g. 7 days instead of 9 after chemo). Some unexplained but familiar pains under the right rib cage fore and aft, and perhaps some neuropathy (tingling, numbness) in the nerves of the extremities, but very slight. This can be a somewhat durable side effect of the Vincristine. Tingly fingers. Tingly finglies. Hey, wait, the head is an extremity, too, right?

As expected, I'm neutropenic again, although a tad less so than at the last nadir exam. (WBC of 1000 vs. 800) So, I think what happened is the nadir just happened early and I'm on the uptick.

Neutropenic -- It's good to know some Latin, isn't it? Makes it so easy to break down these medical words. Let's see. Obviously "neutro" as in "nutrition", "penic" as in... well, ... hm. Food for the ... no, that for sure isn't the case. Must have Greek roots.

Brother S. gets some important test results this week, too. Keeping him in the old T. and P.\

best to all, D

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!

News from the Neutropenic

Standard 9-days after chemo checkup, Friday, found me pretty wiped out from GI virus. I thought I had it under control, eating solids etc. by Wednesday, but the diarrhea & queasiness & weakness returned on Thursday. Back to the Lomotil. They topped me off with a liter of saline, and took the blood counts.

This time, the WBCs etc., heretofore exemplary in their deportment, had stooped to the seriously low range, which is considered to be "neutropenia." Means you can't handle bacterial infections. The condition is almost certainly from the virus, but they took additional tests to be sure. Friday PM was one of those days when, all things considered, I had to wonder exactly why I was putting myself and everyone to such trouble when it's clear that the universe would just as soon finish killing off the Kay family altogether. But the bottom line is simply that I get antibiotics, wash up more assiduously, and have to stay away from festering, oozing masses of humanity.

Things are improving, for sure, though. I think I'm off the Lomotil at last & eating mostly normal human food (made from fresh, normal, organic humans). Brother In Law S. arrived Friday providing much needed boost to spirits. We risked a few low-human-density outings to good effect, scored some good books at a bookstore & sneered as only the envious can do at some egregiously humongous wide-screen LCD TVs -- wherein one apparently dedicates a wall of one's home to watching larger-than-life butts of pro wrestlers. Talk about getting queasy. It is interesting to discover just how one's body feels about certain things (e.g. TV shows, ads) when one is marginally queasy to begin with.

Good news is that taste buds have largely returned, apparently with a fondness for V8 juice acquired in whatever foreign land they vacationed in. Go figure.

N.B. Juices made with coconut juice (not milk) truly do taste like fruity spit, however.

OK enuf already

Did go to VT, got little done except hold a baby who had the exquisite taste to think I was uproarious. I suspect I just looked much more like a baby than anyone else he had seen recently, what with the hairless face and all. Friday AM the beard remains were still scraggly, the hair was looking like a dustball, the mustache was OK, but in a fit of haste I shaved the whole billiard ball. Frankly, I'm glad I'm on this side of the result but if it amuses babies it at least gives me a purpose in life. I do now really look like a poster boy for blood cancer, with little suspicion remaining that I'm just a macho guy with a butch haircut.

What is less fun to live with is the case of gastrointestinal flu I came down with Sat AM in VT. I tried to get my required Prednisone pill down my delicate stomach this AM, and the incredible bitterness of that drug brought everything back up. I did not try to retrieve the pill. The good news is that KW has had oh, at least 2-3 days of NOT being sick.

I also have found that (as predicted) my taste buds have apparently weirded out on account of the chemo. Everything tastes... well, flat. I think the salt receptors in my tongue are what's taken the hit. Tostitos taste like paste. Cheese tastes like better paste, but with the flu cheese is not a great foodstuff. Juice is ok, but it's short on fruitiness.

I tried to visit the VT house with an upbeat and pragmatic attitude, but by Sat. afternoon the memories had got me down. (Hence the visit to the young friends with baby.) By now, Dad would have had the garden rototilled. Pam's perennials are up. She would have been retiring there. With much the furniture moving out, the 10 years of increasing minor neglect of the house from the folks' declining years are visible. Fortunately, our nice new tenant knew and loved Mom and the place, and has a little girl that Mom loved. She's taken the room where Mom's dolls are staged.

I do hate being sick, but am aware I could certainly be sicker. Grateful too for all the many loving friends and family I have.

I may be currently tasteless (well, some would say not just currently) but I have great taste in friends. Especially the salty ones.

Chemo #3

Yesterday was chemo treatment no. 3, and so far not much different from the others. I feel about 90-95% today. I'm not quite ready to bite a tiger, but perhaps gum a kitten. (Sorry BC, I wimped on your alternative punch line; this is a family-ish blog.) Spring is sproinging, which helps immensely. I may even get up to VT tomorrow to help clear out the house for a tenant.

Dr. D. is pretty enthusiastic about my progress and chemo tolerance. He confirmed that (as far as he can tell) what's left of the big lymph node is now just scar tissue. He is now talking about the minimum number of treatments, 6, instead of 6-8. Yay!! Said my tolerance and lack of need for nausea drugs was "bordering on eerie" (I paraphrase), but also that older patients apparently are less sensitive to that than younger ones. Hmm. Hmph. OK. Blood counts better than ever -- all within range for a non-chemo-patient.

I get another scan for cats in about 20 days, to see if insides and outsides match. At the end of the 6 treatments, they may do a PET scan (like cat scan, but includes dogs & goldfish).

Dr. D. reiterated the conundrum, that the more aggressive lymphomas (like what mine transformed to) are more susceptible to nuking by chemo than the indolent ones. Good? Bad? Indifferent? Who knows? The goal remains to knock the disease back to "indolent", but they really can't tell if they have done that. Apparently being able to determine success immediately after treatment is the pot of gold, and some really sensitive measurements are being tested right now that look for DNA of the cancerous cells in concentrations of 1 ppb or less. !

Y.A.B.

Or, Yet Another Bug.

I was feeling kinda crummy, bloated, no appetite, gassy, queasy, weak & shaky for a few days, figuring it was the outfall of all these digestive drugs combined with maybe chemo catching up with me.

Started feeling better last night & today, and guess what... now Katy has similar symptoms! In fact, she's downstairs losing her dinner as I type. Oy veh. So, it's not the chemo, not the PPI smorgasboard I've been swallowing, it's yet another bug infecting us.

So, yes, anonymous commentator on the last post, I like the "advance directives" you suggest! BACK TO HAWAII, DAGNABBIT!

Still good

Esophagus still improving, still feel reasonably good. Was contacted by health insurance co. today, supplying nurse who will check in by phone periodically to make sure everything is going well, coordinate between docs if nec., etc. This is a good thing, I think. The only disconcerting point was when (going down a checklist, I'm sure) she brought up "advance directives". Yeah, everyone should have one, and I don't. But I've seen enough of advance directives in the past 3 years. They are definitely good things to have. But when you're trying to stay positive and thinking OK, this is working, it's not something you want to hear about. Not the nurse's fault at all, but a downer nonetheless.

On a more positive note, we had 16-month old godson H. and his Mom, C. over for dinner tonight. He was a lot of fun to watch and play with. Plumbing and water-related things are always a big hit, as are mechanisms of all sorts. Katy explained to him the workings of activated carbon filters in the Brita water pitcher. He also mimes Alex by sticking his tongue out and panting, which is a hoot. Played on the piano a bit; did animal noises for foam cutout animal shapes. Always a good time hanging with the M. family!

TGIF, and a Good Day

Last 2 days things have been improving! Saw nurse-practitioner re esophagitis drug failure, switched proton-pump inhibitor (PPI) to AcipHex for now. My current hypothesis is that rotating PPIs (Protonix, Prilosec, AcipHex) will keep them from pooping out on me. We'll see. Gut still feels weird and strangely painful at times, but the "muscle rub" phenomenon is at bay. Yay!

Bigger hooray: Saw Dr. M (colleague of Dubois) today for standard 9-days-after-chemo blood & etc. check. Not only were WBC (white blood cells) and RBC (red blood cell) counts in or nearly in the normal human range -- whereas they have every excuse for being depressed at this "nadir" point in a chemo patient -- but the ever-vanishing Mr. Potato Head (the formerly 7+ cm lymph node) is so far gone, it warranted two (count 'em, 2) "that's amazing!"s from Dr. M.

OK -- We'll take it!

Also in the hooray category: Katy saw Doc re her ongoing battle with the most recent cold, got some good advice, felt well enough to work the rest of the day Thursday and all today (Friday). The secret is volumes of salt water up the schnozz. Now, if that's not a reason to go to Hawaii and be surfers, I don't know what is.

Like swallowing muscle rub

Imagine swallowing soup that's too hot, then taking repeated spoonfuls of, oh, Icy Hot or your favorite muscle rub. That's kind of an approximation of what I've been feeling all day. The Protonix is somehow not working any more; maybe it's the effect of the cold or maybe with some people it just stops working. (We've read a few reports of that.) This is a repeat nightmare of several years ago when I presumably had "pill esophagitis". The Prilosec prescribed simply didn't work or somehow made things worse. In fact, as now, nothing worked.

If I go see a GI doc, they'll just wait a week, do an enteroscope, then shrug, and say, "Yup, looks bad, expect it to last several months; how's that Prilosec working out for you? Here, have some carafate" like they did last time. Been chugging carafate for weeks, tried Prilosec, tried Protonix, Dr. D. suggested I can either switch back to Prilosec at 2x/d or stick with the Protonix. Some GERD sufferers report Protonix failure then success with AciPhex, so maybe I'll beg some of that tomorrow. Tylenol, sips of water, warm boullion, hot showers, cold night air, all help briefly. Nothing helps for long, and of course inflammation gets worse at night, and with GERD -- no sleeping flat anyway. So maybe an all-night blog. Do have some serious pain-killer left from the bone marrow biopsy. Tried half of one this afternoon, didn't help much, just made me dopey. Stunningly bored, have slept as much as possible, but can't focus on much besides the pain.

Today is the one-year anniversary of my Mom's passing on. Mom, if you've settled in, I could use a hand about now.

Bloghh

...which is just about how we feel, at present. We've been passing a cold back and forth & it's picked up momentum each time. Katy was home sick Friday PM and Monday, and is back at work but feeling like crap. I thought I was past the cold, but today it returned with more force & it's aggravating my esophagitis/ pharyngitis/ otitis, whatever the heck it is, as well as plugging up my ears, nose, and throat. I was supposed to be working on the tree inventory for the town of Framingham, which was supposed to move into high gear this week. I was supposed to sit for Henry, our godson, tonight, but had to bail on that; Katy's bailed on her evening church meeting.

Energy levels too low to go beyond essential sanitation; in light of that, I suppose the good news is that the Christmas tree is holding up pretty well. Got a loverly, pre-owned silk cap and half gal of primo VT maple syrup from Pop W. Will apply one to my head and put the other down my throat but not sure which, yet.

Bitch, moan, carp, whine, curse. Rinse, Repeat.

"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

More Maui

Maui continues to love us and vice-versa. Went ziplining yesterday, will try to put a few pix of that here or somewhere. Trying to remote blog pix and vid from cell phone, but still not working as advertised. Family could try the Sam & Am. anda site, the pictures section. Doing some laundry after breakfast at friend Susan's, then going to Little Makena beach nearby, then...?

Anyway, thanks for all the love & messages! I think just being here started to shrink the tumor more, but started a 2nd course of steroids anyway. Apart from an increased tendency towards hiccups in the evening, no adverse side effects. (Sam & Amanda's tip was see if doc will let me taper up, taper down, if necessary.)

Still in the plans: hiking in the Haleakala crater, maybe biking down, road to Hana & waterfall with pool!!

love to all,
D&K

Hi from Maui

We made it! Arrived after 25 hours, but up at 7:30 for breakfast with friend Susan in Kihei, out on the beach by 10, and preparing for some of our activiites later. Susan's new place (and our hotel) look out towards Molokini, Susan's with incredible views out her lanai, breezes through the windchimes as blue and partly-cloudy whirl across the sky. Temps in the high-70s to low 80s, water perfect, breeze constant, soft, and humid.

What an incredibly healing, relaxing place. Every jangling nerve in my body knows it is in a different state. Floating in the waves, body surfing, hearing the infant whales call their moms when our heads go underwater. (Well, they call anyway, our heads just happen to be there.) Susan is delightful and her home radiates peace and life essence.Got a mellow that back-home realities cannot harsh.

Aloha!

Dr. D. says we're good to go!

So, Dr. Dubois says he's very happy with my response to the 4-day Dexamethasone (steroids), and we're good to go to Maui! The response is a temporary effect, and so I have refills in case I have to play "whack a mole" with the node for another 4 day pulse. Sam and Amanda gave me a tip for mood management in case I go the other way. I also have a scrip for antibiotics, instructions to call if anything arises (in the way of problems, that is). With the good cheer of friends and family ringing in our ears, we appear to be stumbling our way to Maui.

Of course, anything like this is beset with second thoughts, and (absent steroids and at 11PM) I am champion of 2nd, 3rd, and 4th thoughts. E.g. There's a snowstorm coming in just before we leave! Is Katy feeling well enough? Is that a weird twinge in my back? Will we be too far from our dear friends and family? Should I be second guessing two of the best lymphoma specialists in the area? Hmm. Probably not, on that. Geez, I really can't stand myself without a backbone, it's like having Woody Allen live in my head ...let's see, where are those steroids?? This is probably what comes of having [too much information alert!] chronically low testosterone, and why the steroids feel like the world's finest antidepressants on crack, with a side of Margaritas to me. I think I'm going to have to take up base jumping or something to keep the adrenals functional after all this. (Great thing about base jumping is its binary outcome: yer either psyched to the max, or dead.)

OK, well, I think I've talked myself down from the panic attack, will take EVERYONE's extremely fine advice and TRY TO RELAX!!

Still progressing

Well, I repeat, I LOVE STEROIDS! Oh, yes I do. (Oh, yes and all of you, my wonderful friends and family, too, of course.) Progress continues on the reference big node and mentally I feel like a million bucks. Of course, when the steroids wear off.. it's probably "hide the chain saw, Henrietta." But with luck by then we hope to be cleared for Maui.

Katy continues to ply her super Excel skills to update the graph in the last posting. (OK, you stats geeks, we know you're not supposed to do the best-fit line on averaged data. Live with it. Excel doesn't know any better.) Don't worry about the little uptick today on the small-dimension line, it's not statistically significant. The large-dimension line has a much better R-squared anyway, so it's a much better predicter.

Chemo is scheduled to begin March 5.

Progress updated

Updating this post to Monday: At 81 hours into the Dexamethasone pulse (corticosteroids), the large tumor is continuing to shrink. Yay! Now below Dec. 21 measurements. Enough? We have no idea, but Dr. A.F. says "GOOD NEWS". Both docs have kindly answered our question in re: why not surgery/radiation.

The graph below shows our caliper measurements over time. Click on the image to enlarge it.

Coming Soon: New, shrunken tumor photographs! Oh, boy.

Steroids are great. I am mentally totally jazzed. People say I'm just like a very alert version of my better self.

Have learned that there are definitely two opposite ways to look at this: from the death side, where I have had lots of time these past few years with my Dad, sister, and Mom -- and the life side. I see the life side when friends take us in and share their lively lives that have little to do with disease and death, and feed us and tell us stories. And most especially Tonight, after riding home from seeing much-loved father in law, in rain, good programs on NPR, then on arriving home impulsively crashing into the sweet sexy arms of my wife like a mere 30-year old, remembering health and optimism, I remember what it is to be alive, to think of future and new life. More joy than in years.

Sunny daze?

We made a decision today, Thursday (albeit a revokable decision) after both doctors weighed in. Both agreed that a "pulse" of a steroid, specifically dexamethasone, should -- for now -- yield results equal to the R-CHOP. The effect should last long enough for us to take our vacation, if we want to, without concern for all the side effects of R-CHOP (especially photosensitivity!). I would then begin R-CHOP upon return.

Being cautious in the extreme after my family experience, we insisted that if we were to take this path, both doctors should agree it creates NO additional risk over starting R-CHOP now, and allow no room for regrets later. We got an affirmative response on that.

Perhaps most reassuring is that Dr. Dubois can check my progress on the dexamethasone next week. My gigunda-node will provide a useful guide to that, as it is so very accessible. If we are not all perfectly satisfied, we can still cancel vacation plans and take the R-CHOP train.

Radiation of the big node was ruled out, as that is only for indolent lymphoma, which I technically no longer have.

So... the good news is that we may be able to get to Maui -- and enjoy it -- after all. The bad news, of course, is that I now have a more aggressive lymphoma. We did not discuss prognosis, although clearly I am still on the good side of the curve for my diagnosis.

It's really hard to know how to respond to all this. Should I be fearful? Angry? Disturbed? Moderately annoyed? Relatively indifferent? Pleased? How does emotional response matter? Does choosing a response make any sense? I mean, a response should just be there, I shouldn't have the option of choosing one, right? That's like choosing to like, for instance, boiled okra. And yet it seems to be a choice. How odd.

I guess I'll go take more pictures and measurements. I'm a geek.

Disappointing news

Today pretty sucky from nearly any aspect. Weather is complete glop -- inches of it.

And then, Dr. Dubois did have some disappointing news for us. The large node biopsy shows evidence the disease is on the edge of transforming into a more aggressive, large-B cell lymphoma - at least within that node. They found some large B cells there. This disqualifies me from the vaccine trial. It also means going to a more aggressive chemo -- the one most people get, called R-CHOP. The weird good side of this is that chemo is more effective on more rapidly-dividing lymphoma cells, so this may knock me back to the earlier state. Among other consequences, much needed SAD therapy, vacation in sun, may be at risk. Along with what remains of my hair.

However, all the other nodes are progressing at the indolent rate. One even shrank. And there is no evidence of cancer in the bone marrow. Moreover, I have NONE of the so-called "B symptoms" associated with more aggressive disease such as tiredness, chills, night sweats, etc. So for a guy in my shape, I'm in pretty good shape. Mentally, we're just a tetch punchy. Did I say "a tetch"? Perhaps a tad more than that.

----------

New, in the "too much information" category (no kidding) -- So many cancers are invisible and so carry an air of unreality. What brings it home for me is seeing with my own eyes the sheer physical presence and growth of the big honker. Being a geek, I've taken a series of photographs of it from Nov. 15 through Jan. 6, which, if your curiosity exceeds your prudence, you can find here. It may take a while to download, esp. if you have dial-up. If after reading the opening caveat you change your mind, just click the "Back" button on your browser (Left-arrow <= at top left of window).

A Brief Period of Nerve Wracking

This morning we got a call from Dr. Dubois' office, to meet with him 8AM Wednesday to review biopsy results & plan course of treatment. This was seriously nerve-wracking, because we figured everything would be as expected and the next step would be R-CVP treatment. So we faced 24 hours of nail-biting. Is this just a normal step in planning? Did the biopsy show a transformation to a new lymphoma?

Katy (who is home sick still) had the brilliant idea of actually (gasp) asking the person who called what this visit represented. Turns out it's just S.O.P. for beginning treatment. There is nothing unexpected in the biopsy results that prompted this visit. WHEW!!

Course of treatment, duration

No news yet today on when I'll begin the R-CVP. We've been kind of hoping for mid-week because the timing will work out around our vacation(s). We're also waiting to hear if they can make the vaccine and to be sure the disease hasn't transformed. But I can begin treatment without knowing those.

The course of treatment is this: 6-8 chemo sessions, 3 weeks apart. (About 6 months). Then I get 6 months off for the immune system to recuperate. So about a year from now we begin the idiopathic vaccine, once a month for 2 years, including some self-injections, more CT scans, and more bone-marrow biopsies.

That's assuming that the sponsoring company continues the study, that my disease does not transform, that they can actually make the vaccine from my biopsy (5%-10% chance they can't), and that something better doesn't come along. And odds are (60/40) that the vaccine won't work. Also, the company failed an earlier clinical trial goal and unless they get acquired, their cash burn rate will put them out of business this spring.

What's hard is to stay optimistic (which is rational given the overall success and rate of new developments in this field) and which is good for the immune system in general. My experience with siblings Tom and Pam has led me to expect the worst. So at my best I'm optimistic while constantly expecting to hear "oops, something has changed." Or, "sorry, it's not responding to conventional treatment".

Whatever weekend

Katy has yet another cold, getting them about 1 per week, poor kid. Coughing and sneezing continuously, violently. Snowy and dark the whole fucking weekend. Tennis ball node looks like a giant bruise, stitches irritating. Got absolutely nothing accomplished yet another weekend. Xmas tree still up. Soup for lunch, soup for dinner. Sky cleared this afternoon, but brain was full of screaming contradictions so took a 3 hour nap. Fuck it.

B Cells and Winnebagos

Next step, starting R-CVP next week. This is the "standard of care" therapy, with R-CVP standing for Rituximab, Cyclophosphamide, Vincristine and Prednisone. Rituxamab (or Rituxan, the trade name) is a "molecular antibody", one type of new wonder drug,and CVP is a chemotherapy cocktail.

Rituxan works by latching onto a specific protein molecule that sticks out of the B cell like a TV antenna from a Winnebago. The other parts of the immune system (T-cells, macrophages) see this Rituxan like a UFO, now attached to a Winnebago. Since their job is to chomp the UFOs in the body, they chomp the whole thing. See, the cancerous B cell (a Winnebago with an antenna) looks just like a good B cell in most respects (also a Winnebago with an antenna), so the immune system leaves it alone unless it has this UFO attached to it.

Now, unfortunately, ALL Winnebagos (cancerous and normal B cells) have TV antennas (this protein), and the UFOs (Rituxan molecules) only look for the TV antenna. So all Winnebagos come under attack. Fortunately, the Winnebago factory can make them faster than these self-reproducing Winnebagos (cancerous B cells) can reproduce. As a result, you end up with lots more good Winnebagos than bad ones.

Bye, opsy

Bone marrow biopsy was piece of cake. I've had more uncomfortable dental procedures. Yay, drugs. Also Yay, Dr. Dubois, 'cause he stopped whenever it started to hurt and pumped in more local anaesthesia. This takes more time than many technicians take, which is apparently one reason why there is such variation in reports on how much it hurts.

Tnx, Mary for the lift. Katy came to pick me up at 1. She just caught her third cold of the season (arghhh) and wanted to come home anyway.

Percocet, game & match

Dr. D. finally called this evening after a little prompting of his staff by me. The deal is I get the bone marrow biopsy tomorrow noon-ish in his office. I get one or two Percocets, an Alprazolam, and "an oil truck load of lidocaine" where I need it. He says the pain depends more on the skill and speed of the technician than anything, and he's done thousands. He'll also stop if it hurts too much. Gonna need a ride.

A slice of life

A bit more conversation today about the bone-marrow biopsy. At present I'm scheduled for Friday 12:30 with Dr. D. He's supposed to call and figure out the morphine question with me.

I've had one hell of a stiff neck for the past few days, probably originally from sleeping weirdly on it or perhaps doing something wrong at the gym. Of course, my imagination has begun to ascribe this to previously-undetected lymphoma, and suggest that perhaps it has invaded my spine or transformed (as lymphomas can do) into something painful. I need to find other things for my imagination to work on.

Probably in the "too much information" category -- but at this point I don't really care -- At right, top is one slice of many hundreds taken during each CT scan. The roundish object just left of top, center is the big, honking lymph node. The slice is below hip joint level, and the white doughnuts (yum) with handles are cross-sections of my thigh bones.

Addendum 2/13/08: Also in the "too much information" category -- So many cancers are invisible and so carry an air of unreality. What brings it home for me is seeing with my own eyes the sheer physical presence and growth of the big honker. Being a geek, I've taken a series of photographs of it from Nov. 15 through Jan. 6, which you can find here.

The short story up to Feb 5

So, here's the short story:

In January 2006 I was diagnosed (DX'd) with indolent follicular non-Hodgkin Lymphoma, or fNHL.

• Indolent means it moves slowly, and indeed, for two years it barely moved at all.
• Follicular means that under a microscope it looks kind of like hair follicles
• Non-Hodgkin (note, not Hodgkin's) is one of two major classifications of lymphoma. There are 60+ types.
• Lymphoma is a blood cancer like leukemia or multiple myeloma. It specifically affects the white or "lymph" blood cells that combat infection. More specifically, it is a cancer of the B cells, one of three major elements of the immune system.

Lymphoma is when one individual B cell gets cancerous and starts reproducing (cloning) itself. All the cancerous B cells are therefore "identical twins". It becomes harmful as the lymph nodes increase in size and crowd out or otherwise impair body functions. (Lymph nodes are places where B cells go to mature and hang out -- sort of like college. They are born in the bone marrow.) So... it's a systemic (not local) disease almost immediately, since lymph goes everywhere blood does.

This fall, one particular lymph node started growing like topsy to where it is now about the volume of a tennis ball. Additionally, since I am CT-scanned every 4-6 months, the doctors could tell that other lymph nodes were also growing and my spleen (where B cells go to get recycled) was enlarged.

Dr. Dubois (dew-bwah), my hematologist-oncologist, decided in January that I must begin treatment. If you saw this one node/tumor you would agree. We were about to begin doing the standard biopsy of this big tumor preparatory to beginning standard treatment. However, at my prompting, it turns out that his principal colleague at Dana-Farber has been participating in clinical trials of a gee-whiz new kind of drug called an idiotype cancer vaccine. We had to decide in a hurry if we wanted to get on board, because we really want to start whacking this thing. We decided that we did, in part because the first year of treatment is identical to the "standard of care" treatment I was about to begin anyway! But, it means that Dana Farber has to do somewhat more extensive intitial preparation than Emerson (the local hospital in Concord) would do.

So, today I got a nice chunk taken out of mr. tennis ball, and got CT-scanned once again. The biopsy tissue goes to California, where they attempt to make a vaccine specifically for me from it. There is about a 5%-10% chance they can't.

I also need a bone-marrow biopsy before treatment can begin, and therein lies todays' frustration: I heard that these hurt like hell, and so get general anesthesia, not just local. So I asked Dana Farber, they said they use morphine and atavan (good stuff) but wouldn't knock me out. They only do that for pediatric cases. So I said, OK, fine. They also said, let's wait until we know the vaccine can be made, should be 5-7 business days. Sounded good to me.

Today, I find out that no, it could be weeks before we learn about the vaccine, so if I want treatment to begin, I need to get the bone marrow biopsy done regardless. Dana-Farber tells me I can get it done locally (at Emerson). Turns out they didn't "get" that I'm okay with morphine/atavan and decided I don't need to be knocked out, and were referring me to Emerson because they just don't do that. So I correct them on that and schedule one at Emerson, only to find out that Emerson does NOT use morphine and atavan, just a local. Ouch. Unless it's done in the hospital, not the office. Which will be a longer delay, I'm sure. So I'm caught between wanting to get started and wanting to avoid a pain that has been described as "someone hitting your hip bone with a chisel and a mallet." Am I being a sissy? I don't think so, but I am causing problems. But I wouldn't be causing them if people had given me all the information at once!