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.