Real Life

Yesterday I had a massage. The last massage I had with this lady, Luata, was the one where I left and was pleased and proud of myself for walking the 10 blocks to Laura and Sonja's house. This visit, I walked half a block to get to the office from the car, and had to lean against the wall and pant for a minute or two to recover. And it was just as big an accomplishment. Having a massage was heavenly, of course, in part because it was an outing, and it was something I do in real life.

Real life isn't at all clear yet, five days out of the hospital. I'm not sure, for one thing, how long I'll be on oxygen. I've already turned it down, from 4 liters (per minute it turns out, but it also turns out that I have no idea what that means, either—what is a liter of oxygen? How much to people normally get?) to 3 liters, and my sats (oxygen saturation levels) are holding steady at 98 or 99 (normal and healthy) except when I climbed the stairs last night and briefly dropped to 88 (too low, but I was back up within about 30 seconds which is very good). So maybe I'll be off oxygen before I get used to filling my auxiliary tanks and hauling them around? But maybe not, and maybe I should just get in the habit of filling my auxiliary tanks and leaving the house for things, because that's the best way to get to real life. And I know, I know, this is real life—that's all we can live, real life, whether in the hospital or at home, on oxygen or not. Maybe instead I'll call it "familiar life", because that is actually true.

Anyway, familiar life has included a massage, friends visiting, a dog, movies, paying bills, a workman fixing something about our house, and, of course, my surroundings, which include comfy chairs and a sofa as well as a bed . . . and changes of rooms!

Increasingly familiar life included today a visit from a home nurse (who was a bit taken aback that I'd already reduced my oxygen levels on my own, until she found out that I had my own sats meter and was testing myself all the time), and tomorrow will include a new chest CT (to try and tell the difference between the pneumonia scarring and the cancer nodules), and Friday I'll meet with Dr. Specht to talk about results. There is some chance that she'll be changing my chemo regimen—one reason we went with Taxol and Navelbine at the beginning was that they had been so effective seven years ago—but I didn't seem to be responding very rapidly this time around, and so based on the results of the CT Thursday, I may be started on some new chemo. I will continue with the Herceptin (which I already have had three times since entering the hospital) and the Pamidronate (which I also already have had once since then) because they aren't technically chemotherapy drugs, and are useful anyway.

I'm still due for a visit from home Physical Therapy and home Occupational Therapy . . . to check out my environment and make sure I'm safe here, is apparently part of the reason. Fortunately, I seem to be safe enough because I've been here five days already without falling or cracking my head on anything so I'm not exactly sure what they'll tell me when they come.

Okay, I think that's it for now. Nothing too terribly exciting (fortunately) to report.

Sleepy

Today I had my first Herceptin infusion back at the SCCA. It was slightly more involved than previous times, because of the oxygen and the slowly growing strength. Mom took me and we went first to the patient load/unload zone and she unloaded me and my portable oxygen from the car into a wheelchair. Since we were a little late already, getting out of the house being slightly more involved as well, she took me straight upstairs (leaving her car in the load zone!) where they got me in immediately (is this a new trend? Because I like it much better than sitting in the waiting room for 30 minutes . . . ) to a bed where, just like in the hospital, there was oxygen conveniently coming out of the wall. Mom then went off to move her car.

I fell asleep soon after getting hooked up, ignoring the newspaper, ignoring my new Paul Theroux book, ignoring even my quad grande decaf latte. I slept hard, and until the strident alarm-clock beeping of the finished infuser rudely woke me up.

Back at home, I lay on my bed and read for a short time then had lunch. I don't think I slept before lunch. After lunch, however, I went immediately back to bed and I slept for most of the afternoon, until almost 6:30pm.

Since living in the city I've noticed a strange dichotomy in myself about sleeping. In the middle of the afternoon, I have no trouble sleeping through daytime noise, even with the windows open. For some reason, I seem to fundamentally understand that daytimes are noisy. In my world, however, nighttimes are not noisy, and I can't tolerate noise when I'm trying to sleep at night at all. The exception is when I'm in New York City, which evidently falls into the same category as "daytime", because I can sleep through sirens there.

Today tested even my daytime tolerance though, at least potentially, but I slept like a trouper through it all: the housekeepers vacuuming--I fell asleep while they were still in my bedroom, trying their best to make the Dyson quiet--and I continued to sleep even while the roofer power-nailed roofing tiles right above my head. I'm not kidding. I woke up once to go to the bathroom, and he was right above my head when I returned to bed, and gone home when I woke up the next time. I had some—not just one—dreams about Liv Tyler and me making pizza.

I believe it's the first time I've slept—really slept—in a month.

Home Again, Home Again Jiggity Dog

I'm at home, and I have been for two nights so far and it's been awesome. There are some ambivalencies, however: yes, I feel much better at home than I did in the hospital—I'm walking more steadily, I can use the toilet (and flush! what pleasure!), I usually leave my walker behind (it'll be great for Ian's and my first stroll to the end of the block with my auxiliary oxygen but it's mostly in the way in the house it turns out), and I'm eating more varieties of foods than just soup. But I'm also still so weak, and being back home I can really compare my weakness. The oxygen helps a lot—I was, in fact, pretty weak right before leaving home a month ago but minus 4 liters of pure oxygen being pumped into my body (at some rate that I don't actually know—I just know the volume). It's time, though, it suddenly occurs to me, to start referring to myself as strong, so I'll be making a concerted effort to do that from now on. So, some examples of my strength: 1. I'm not using my walker. 2. Ian and I went downstairs to watch Seinfeld and I carried myself down and up on my own two legs. 3. I have bathed, well. 4. I brush my teeth every night, and floss them.

Mom is here for most of the week to take care of me, but aside from a few things that I yet lack the strength to do and that have nothing to do with healthcare (ironing and hanging the curtain panels I ordered a month ago, mailing back the color I didn't like), there aren't really many tasks for her. She'll be driving me around a bit (we're quickly getting back to my chemo treatments and whatnot with my oncologist) . . . oh, and she did stand by for my long shower bath and she probably will again another few times. I'm not quite willing to do slippery/large volumes of water/cast iron things on my entire own yet . . .

And Spackle came home tonight! He Frenched me, accidentally of course but nevertheless. Welcome home doggie! Hoover is still out at the farm where Marsh has been a saint trying to train the very exuberant puppy . . . we want him back, too, but are worried about my strength in dealing with a chewer and 50 feet of delicious-looking oxygen cord so we're taking it day by day with plans for him.

Well, I think I'm finally starting to feel like getting into bed. I can choose when to do it now! I choose 11:30pm today.

Probably Tomorrow

If I pass the night well tonight, looks like they're going to spring me tomorrow afternoon. I'm a bit nervous about going home, but I know it's the best place for me, and I want to be there. I'll have a walker, oxygen, a shower stool, and a raised toilet seat to accompany me, as well as the tons of art and gifts that have been lavished upon me during my three weeks + here at the UW. I will not be ready for visitors right away (unless you are in town from far away), but maybe later on next week? Stay tuned for tales of transition . . .

How Am I Free?

A couple things have led me to ask this question today. The first was that I did a tarot reading for myself the other day when things were particularly tedious, and it was really positive. My environment card was The Universe, which is, of course, everything. It made me cry, because I love that my environment is everything imaginable, but then I had trouble with why this part of The entire Universe, why this hospital, why these weaknesses, why why why???

The second reason was that Debra Jarvis, the chaplain, came to see me, and she asks good questions, which led me directly to How Am I Free?

So that is my question. How am I free here in this locked-down state? How do I find the Universe in the commode, in the popsickles, in the taking of vitals? What is my freedom here? And you all, reading from outside the hospital, what is your impression of my freedom here?

I'll be mulling this question today . . .

Oh, the Tedium

Okay, it's no longer interesting to be stuck in the hospital. Yes, I have a private room. Yes, Ian spends the night every night (which I love). Yes, I even have a great view of a bunch of great trees on the UW campus. But I'm stuck in the hospital. Stuck by my lungs, mostly. Still working on getting them back to normal. But I guess I'm also just as stuck by my weakness—it was a huge accomplishment today to walk twice, around a loop on the floor once, and to the end of a hallway another time—I "showered" again today, sitting on a bench, with an Occupational Therapist who made sure I didn't tire myself waiting just outside the curtain. I am weak. I am incapable of taking care of myself.

And, hoo boy has it gotten old.

Drug-Induced Psychosis

In my mind, I came into my room through the back door, the one behind the head of my bed, and saw my brother and my friend J sitting at my table, waiting to see me (in reality, I had simply woken up). I was pleased to see them, no offense Deane but particularly J because I hadn't guessed he would come. (Deane, I and the nurses appreciate every visit of yours and all your treats). After saying hello, though, Deane said "You need to put your mask back on."

Now, I had just come in from somewhere where I was clearly fine (dreamland), and I did not want to put my mask on. This was my hi-flow oxygen mask, and was keeping me alive basically, but for some reason I had taken it off (probably while I slept), and decided that I didn't need it any longer. So I said "No, I don't want to put it on," pretty matter-of-factly, I thought.

"Beth says you really have to put it on, though, to get enough oxygen," Deane said, cajoling me a little.

I suddenly got angry, and paranoid, and wondered why the hell Beth, who was just my "nurse"—this category suddenly had no meaning for me, carried no weight at all—had any authority over me.

"Look, I don't need the mask anymore, no matter what Beth says. I'm not putting it on again." Deane looked nervous, and suddenly my cousin Stacey appeared next to my bed, having come, as I thought, from the door behind my head (she was not actually there at all at this time—I was repopulating with an image of her from a previous visit). "Hey cuz," she said, about the same time Beth came in from the front (only) door of my room "hey Beth! Calin, you've really got to put on your oxygen mask, you know. Beth really wants you to."

At this point I started to get scared, and paranoid. I did not want to wear my mask, I didn't believe I had to wear it, and it seemed to me that all these people, who were supposed to be my support and my friends, were instead banding together to do something sinister to me—I felt like I was in the Twilight Zone and everyone suddenly had evil intentions. I started to get panicky, and probably a little belligerent.

Deane finally said "Look. I don't feel comfortable with you making the decision to go off your oxygen without Ian knowing about it."

"Okay, fine," I said. "Can someone call Ian?"

"And," said Deane, "would you please wear the mask until he gets here?"

And I put it on, although reluctantly.

Beth called Ian, who arrived within 10 minutes, and brought with him a complete calming succor. I cannot truly describe how much he soothed me. But it turns out I trust him, completely, with my life and with my mind. His presence and explanations were all I needed—and were the only thing that would help—to see what I had been misinterpreting, what irrational fears I'd had.

These fears and hallucinations were for me the result of withdrawal from the main intubation drugs (the names of which I can't remember), but they gave me a new insight into mental illness. There are people whose own brains have the chemical balance (or imbalance) to induce hallucinations, or paranoia, or strong feelings of "me against the world." My heart goes out to them, and I deeply wish help for them, a drug to calm and soothe and support, the way Ian calmed and soothed and supported me.

New Water Bottle from Erik!

Clean

This morning started rather inauspiciously. Actually, the inauspiciousness started last night, when dear Laura and Sonja brought me a huge bowl of pho and a chocolate milkshake and none of it tasted good. It just tasted icky. I ate some broth and a couple pieces of beef because I know I need to support my body's incredible ability to heal, but I really had to worry it down. I was also just worried in general because of having the nose-air-thingies instead of a mask. You see, my brother and I have always been prone to sinus issues, particularly as young, loud mouth-breathing children who drove my noise-obsessed father crazy, obviously on purpose, with our plugged noses. I can breathe through my nose as an adult, and I believe I usually do (in fact, I am right now), but oxygen pumped (even whisper-soft) directly into your nasal passages is incredibly drying, and I found my nostrils boogering up at an alarming rate. You can put the nose tubes in your mouth and get the oxygen that way, which I did the three times I had to dig out the obstructions (I know—EW), but this is definitely not a long-term solution.

So I asked for a mask back, explained my issues, and they were happy to oblige. The mask I got has a water feature which is actually quite pleasant in a variety of ways. The main way is that it keeps my mouth and nose well humidified, but the purely aesthetic way is that it literally sounds like a brook babbling over mossy stones and glinting shallows, through a sun-dappled wood. I am not, as we know, typically a fan of white noise in any form, but whether out of necessity or simply comparison, I am a fan of this particular brook.

I was still anxious, though, so my nurse offered to give me some Ativan but I didn't really want to take it. I knew they had just been giving me low regular doses (to keep me under control I'm sure), but they'd stopped doing that, which I took to mean they wanted me to survive without Ativan at all, not that they instead trusted me to know when my body would actually benefit from some. Fortunately, Laura knew for me, and so I had some. And then, the dears each gave me a foot massage and it was so wonderful and amazing, with the babbling brook and the soothing anti-anxiety meds and the rubbing in the darkened room, and I slept well, and for the first time, perfectly flat (instead of at a slight incline first necessitated by the nose feeding tube then by my inability to keep from coughing flat on my back).

Anyway, at 3:00am I woke up and ate some peach pie that Sonja had brought, and at 7:00am I woke up and immediately had to use the commode (no connection to the peach pie, just the absent catheter). Ian helped me get on the commode, but something—suddenly being upright, the exertion of getting off the bed and into a sitting position (I tell you, I'm w e a k), the fact that I'd slept flat the night before and moved around things in my lungs—I was peeing, then suddenly I was coughing, and then I was desperately calling for a basin and then I was throwing up and coughing and not getting enough oxygen and stuck there on the commode . . . it was scary.

My nurse came quickly, though, and got me back to bed, and gave me some Compazine, then offered me Ativan because I was, clearly, still a ragged mess. "But they're weaning me off Ativan," I said.

"Who is?" asked my nurse. "Your doctor?"

"Well, they were giving it to me all the time and now they're not."

"Yes, they're not giving to you as a matter of course, but it's on your list of drugs that you can request, and so you can decide if you feel you need it."

Oh. I can be in charge of whether or not I'm sedated a little? Well then. I get what Laura was saying last night, and I agree with what she would surely say now, that this is a good time to sedate me. "Okay, then, yes please," I said.

Since then, things have gone well. I've moved to a new room: 7 Southeast number 7354, ph. 206-598-6395. This room is not in the ICU, it is in "Floor Care", so I don't have my own nurse either sitting outside my door or inside helping me with serious things. Instead I have to wait a little longer for some things, but I have a normal hospital bed (the ICU mattresses are air-filled over-designed and over-built ones that were, I suppose, comfortable enough for drugged people even though I always ended up crowded down near the end) and it's just freer. And I can actually see my view—my last view was great, but it was primarily behind me.

AND—Today I took my first shower since 1 July. A lot of loose skin sloughed off, but not all—I'll have to shower again, probably soon.

And I took special care with my armpits.

Quiet, but Smelly

Lots of changes afoot today in 8 Northeast Room 8226, not least of which is that I have been officially upgraded to non-ICU status, which mainly means I need to plan farther ahead when I want attention because there are definitely people on the floor in more need now than me. It also means that I'll be changing rooms, probably tomorrow, which, yes, doesn't count as a change from today. Another change definitely from today though is that I walked, practically shuffled but did move my legs, one after the other, down the hall about 50 feet, and then back again. Yes, I was pushing a huge industrial-sized walker and PT Jason was monitoring my oxygen levels and someone (Stan?) was following along behind me with a wheelchair closely enough to hit me in the back of the knees (in fact, when I did pause to sit that's probably what it looked like had happened), but I did it, and that was about 200 steps closer to being able to go downstairs to the main floor and see my dogs, who unfortunately aren't allowed in the ICU and would never remotely be mistaken for service dogs. Certainly not by blind people.

Note: my dogs are not currently on the main floor waiting for me.

Another notable new absence is my catheter, which I actually had mixed feelings about. I mean, I have to piddle way more times a day than anything else I do down there, even at the best of times, and I just didn't have to my first two weeks here. I could just lounge in bed all day and it took care of itself. Nevertheless, no catheter means more independence. In fact, the commode is sitting by my bed right now, and I'm contemplating using it in a moment. The one thing that's giving me pause is that the door to my room is open. The curtain in front of it is closed, and my sense of personal boundaries has been severely foreshortened in recent days but still . . . and I'm just not sure I could make it to the door safely with a cause less life-threatening than fire. Personal scruple just wouldn't carry me that far. I'll probably be on that commode before too long.

I am no longer on the high force oxygen or whatever it's actually called, where I wear a mask over my nose and mouth and a mixture of pure oxygen and air is blown into my face. I am back to the so-subtle-as-to-be-almost-invisible little nose-thingy. This gives out a very small amount of oxygen, a whisper really, a hint, the vermouth in a dry martini. This gives out little enough oxygen that I could, theoretically, take a couple small canisters home with me as soon as I can do other things like reliably walk up ten stairs and wash under my armpits. And so the gale-force wind machine in my room has been turned off leaving a blessed quiet (one of the first things I remember a nurse asking me here, when I was hooked up to my oxygen, was "Do you like white noise?" And I replied, quite sadly and truthfully, "No." But you adjust, it turns out, particularly when you don't keep waking up to piddle.)

I also gave myself a first "bath" today, where a PT handed me warm soapy washcloths and then warm unsoapy ones and I cleaned myself . . . and I did a horrible job. I think my goal tomorrow will be armpits before stairs.

Rebirth

As I have been mostly lying here in bed over the last several days (occasionally being manipulated, fed, or visited), almost completely at the mercy of the fortunately merciful people around me. I do not even have the strength (or length of oxygen tether either, truth be told), to go to the bathroom myself. Number One is taken care of by catheter without my awareness (except once in awhile when the tube backs up). I understand that I go Number One a lot. Like, probably too much, like maybe I need to be eating more, drinking less water, and just in general working on my electrolytes. Number Two takes place in a bedpan. Frankly, I don't understand how it can be possible that a bedpan works, but, at least in my experience, 95% of the time there's no spillage. Nevertheless, 100% of the time it's an exercise in a variety of stoicisms.

All of this has led me to the realization in the last couple days that what I am going through is a sort of rebirth. I've been pretty much reduced to scratch, at least in one of the major ways I've always considered to be so exclusively me: my body (as for mind, spirit and emotion? Who knows what's coming . . .). For a while I couldn't breathe on my own. Now I can, but it's still much better with assistance. I can now sit up on my own, and I can even feed myself (this has been much less of a WAHOO! moment for me than you might imagine, because my taste buds are a bit off still, and, honestly, the food offered by the hospital for the "soft diet" is awful. Ian and I are working out a private larder). I could today, with the assistance of two strong PTs, stand, and march in place for 25 steps, before the combination of muscle fatigue and lung fatigue became too much and I had to sit down.

I am having to learn to walk again.

And I thought I was going to spend the summer waterskiing.

Still Profoundly Tired

My accomplishments have been vast today, yet microscopic. It was determined that my food intake should all, from here on out, be in the spirit of "Eat Food, Not too Much, Mostly Plants," and so my nose tube was removed (dramatically, painfully) this morning. Of course, the other reason the nose tube was removed was that it had stopped letting "food" through, and since I'd already received the "go-ahead" for a soft diet, there didn't seem to be any point in using any meat tenderizer or Coke (really truly) to unblock it. So two of my major accomplishments today have been oatmeal with blueberries and chicken noodle soup.

I then took a nap the likes of naps never seen this side of wherever naps are big.

And then PT came and got me out of bed, and placed me in a chair, and I sat in that chair, and then I transferred from that chair to the commode and then back to that chair, which is where I'm sitting now finishing this entry.

And now, having accomplished worlds in a drop of water, I'm going back to bed.

My First Baby Step

You all know probably a lot more about what's been going on in my life for the last week or so than I do, but in a nutshell this is what I think went on: I went in for a routine follow-up brain MRI on 1 July and was feeling short of breath; next thing I knew I was in the ICU at the UW Medical Center, intubated and fighting a nasty form of pneumonia (I did catch in passing that the brain MRI was a big improvement). Evidently, when people are intubated, they find this to be upsetting, so all sorts of antianxiety and antiremembering drugs are administered to keep the patient, who is necessarily mute and being fed through the nose, calm. Or a modicum of calm. The effect this appeared to have on me was to make me seem wide awake and lucid at times, and dangerously paranoid at one other time (which I'll go into later). I did somehow manage to email my cousin Laura of the Matching Socks on her birthday—I would totally have meant to, but was completely unaware that I'd done it. Anyway, Happy Birthday Lo! There are also bits of evidence—in my handwriting, unfortunately, of other things I felt necessary to dictate.

I'm almost out of steam, though, so I need to get to my point, and quickly. Once one is intubated, as I said a feeding tube is also placed through the nose. I happen to know first hand how uncomfortable this is, because I pulled mine out in a fit of druggedness, and it had to be put back in. Which did not involve anesthesia, Anyway, when a person in unintubated, she doesn't automatically get to eat normally again. The esophagus has been taken over for up to weeks by a rigid, alien snake-thing, and it has completely forgotten how to tell the difference between breathing and swallowing. These are vitally important differences in sustaining life, so a protocol has been developed to retrain the appropriate functions. The protocol is simple: small ice cubes, plastic spoons, grape popsickles. Since I tend toward small bites and lots of chewing anyway, this test of whether or not I could eat through my mouth again went swimmingly. I'm not sure Ian would've fared so well.

Okay, time to nap. Amazing just how weak the human body can become.

And one last thing, Ian, you sweet, funny thing have so earned rights to post to this blog. Thank you for being so sensitive, so generous, so you.

New decor + no bed of roses

Some new decor and a book, all thanks to the generous relatives in Kirkland.Monkey and Toucan having a chat.

New apron hanging on wall.

A book about things that are more fun that spending a week on the ventilator.


Life off the ventilator hasn't been a total bed of roses so far, although Calin's health is continuing, slowly but surely, to improve.

First of all, having stiff tubes stuck down her throat gave the vocal chords and swallowing muscles a bit of a trial, so Calin doesn't really have her voice back yet and according to the nice speech therapy woman who stopped by this morning, it may take a couple days. Until the swallowing and gag reflex are working full speed, it's recommended that she stick with ice chips and crushed popsicles through the mouth, and brown goo through a feeding tube that was re-inserted through the nose. This feeding tube is small and soft compared to the air tube she had, so it shouldn't interfere with the recovery of her fine-tuned eating and speaking skills.

Second, when the ventilator was taken away, so were the drugs that she was on to help her tolerate it, and it seems that with their absence comes a bit of withdrawal. This has included what Calin described as paranoia and feeling suddenly scared yesterday afternoon. She asked me to spend the night in the hospital for moral support, and I think that made us both feel better, even though it meant I got to witness a fit of tossing and turning starting around 4am during which she described feeling "incredibly jittery" and wanting to "jump out of my skin." Damien, the very deep-voiced nurse, was awesome and helped her through it. She got a visit from two slightly tired-looking residents, and an EKG, and didn't seem to have any other issues, so she was given extra Ativan. The Ativan helped either through it's anti-anxiety and relaxant properties, or by being similar to some of the drugs she was on before, or some combination of these factors. The doctors also suggested that jitters could be related to the steroids that she was on as part of the pneumonia treatment, which dropping down today and will only go a few more days. Either the heavier dose of Ativan or the lack of good sleep in the night has had Calin slumbering away pretty steadily for the last 6 hours.

All in all, it hasn't started out to as the most relaxing July weekend that Calin and I have ever had, but I'm sure she'll weather these troubles just like she's weathered so many before. And this episode will be added to the larder of stories to talk about when the voice is full strength, the lungs are fully healed, and Calin and I, along with Monkey, Toucan, and lots of you readers, are sipping lattes and lying on a bed of roses somewhere exotic on the world party circuit.

Tubes out

Calin had the breathing and feeding tubes taken out at about 10:30 this morning. The first few minutes were a bit tough as she had to cough up the gunk in her throat and get things working again in the normal way. But she got over that and is now sleeping peacefully with just an oxygen mask. Nurse Beth and Drs. Madtes and Parsons did a great job helping out, so Calin continues to be in good hands. Over the afternoon and the next few days the high flow supply of oxygen to the mask will be adjusted to see just how much help Calin needs and what amount of physical activity she can tolerate. For now she can expect to enjoy such simple pleasures as brushing her teeth, eating food that's not Oxepa Therepeutic Nutrition, and talking again.
-Ian

Still doing well, but not quite done with vent.

I stopped by the hostpital over lunch again today. The last three days Calin has been sustaining her own breathing in a nice, relaxed manner. However, the docs are making extra sure that her levels are going to stay high when she gets off the ventilator. It seems to me that with the cancer in the lungs, there's a limit to how high Calin's level can get until she gets the cancer licked, but she can't resume the cancer-licking on full chemo until she's considered healed from the pneumonia.

I trust that she's in great hands, but I'll also try to be around when the docs do their rounds tomorrow so that I can get all the up-to-date info on how they see things and whether they'll be pulling her off the vent tomorrow or not. As Calin has continued to show great tolerance and poise during this balancing act, I have faith that she will soon have her voicebox back and be telling us all sorts of stories of what it was like to breath like Darth Vader.

-Ian

Super news!

I just saw Calin during my lunch "hour" and she had been breathing without ventilator support for 4 hours, which means that she's recovered from the pneumonia at a remarkable pace. She's still got the tubes in place, but has been allowed to breath freely through them and has been breathing slow and easy. While I was there it was 20 breaths per minute, which is a lot nicer than 40-50 she was doing last week. This great success means that they're talking about extubating her this afternoon, which would mean that the initial prognosis of at least 7-14 days was a huge overestimate, and she'll hopefully get to talk again very soon.

So my tenure as substitute blogger seems to be coming to a swift end. While I'm at the helm, however, I'll take this chance to say another thank you to Lexi and Zoe the nurses on duty today, and to Dr. Tai, the awesome lung doc who helped her get on this program, and to Drs. Rockhill and Specht and Becker and Davis and all the rest who provided support during this adventure.

Most of all, however, let me say WAHOO for Calin the overachiever!

-Ian

Reading the blog

Here is Calin reading the comments on yesterday's blog post. The trackpad is slightly harder to use when you've got all that apparatus on, so blog comments are probably easier to scroll through than email and thus a good way to send Calin your thoughts or feelings. Cousin S also noted that comments on the blog can also be used for visitors to let us readers know about the fun times they had on their visit and how Calin is doing.

Notable elements in the background include some pictures of the most beautiful dahlias I've ever seen, grown by a neighbor of Calin's mom who wanted Calin to have some flower photos to go with the mind flowers. Next to the computer are the Secret Garden which she's still reading and the brown and turquoise book that you should all sign when you visit. Behind the books is Deane, sitting next to some hospital art (a cool framed cloth) hung with the prayer flags from Aunt L. Faintly visible out the window is Husky Stadium.

Shortly after I took this picture this evening, Hunky Dave from respiratory came by to check on Calin and the ventilator. He held up the oximeter and said, "could you put this on your finger for me?" and then noted, "But I'm not asking you to marry me." In response I said, "That's good because I'm married to her already." Then Calin held up her fist like she was gonna beat up Dave if her tried anything, which we all enjoyed. Definitely more entertaining than your average ventilated patient. That's one of the things I love about life with Calin—it's never average.

Communication

Ian again.

Having opened the floodgates to the visitors, they've indeed flooded in, with much joy and love. The book that L & S brought is getting lots of good entries. It will remain to be seen whether the amnesia drugs will wipe out Calin's memories of this period, but she'll be able to recreate the stories through this book.

She also has a little clipboard, thanks to sister-in-law K, which Calin has used to fill a total of 43 half-size pages worth of writing in the two days since the ventilator. These are all stuffed into the back of the book. Calin's writing isn't always easy to follow, but it's clear that this is related to the drugs slowing down her hand, but not slowing down her mind. Anyone who's visited can tell a story demonstrating that she's always the quickest wit in the room. Brad the awesome nurse said that he found about 5 pens fallen around Calin when he changed the sheets today, which is further testament to her writing skills (although maybe we should also help her tidy up the pen larder at the end of a visit). One of the notes she wrote today was, "everyone here says that I am doing better." Since she's the only one that has seen the docs on their rounds every morning, she would know best. I agree--she looks better, and definitely much more relaxed now that she's on the vent.

In addition to the books and notes, Calin has also received hand deliveries of a postcard and amulet from New Zealand thanks to C, prayer flags and a beautiful Medicine Buddha painting from Nepal thanks to Aunt L, and a silk flower and a fine scarf from I'm not sure where thanks to A and I'm not sure who. So the place is now nicely decorated.

Cousin S drove from Ellensberg last night to visit and then back that same evening so she could be there for a class at 8am this morning.

I tell these stories not to make anyone feel bad for not visiting yet or bringing gifts. Indeed, there is only so much time for visitors and only so much space for gifts. I tell these stories to let you all know that Calin has been surrounded by love and amusement. So much amusement, in fact, that according to Lexi, the other awesome nurse, Crazy Cousin T and his wife K were so funny that Calin had to be sedated to keep from laughing too much.

A couple pics from the hospital

This morning, July 6, writing on the clipboard in spite of being drugged, on a ventilator, catheter, feeding tube and who knows all what.

Calin clowning on July 1 on the 7th floor with the view of the dark ship canal in the background.

Ian taking a turn with writing

Ian here.

Thank you all for the comments and concerns about Calin's health. S & L, Liz, Marsh, my parents, and I all converged by accident at the hospital this morning. Calin was far higher on the alertness spectrum than I had expected and was able to write on a clipboard with some slightly scribbly writing. She was also able to communicate very effectively with hand gestures although she cannot speak while on the ventilator. At 1:00 she looked at the clock and wrote something like, "I assumed you were all going to lunch somewhere." I said, "your mom has food here and was thinking of staying longer." Calin shook her head and waved us all out of the room, Liz included. In the hallway Marsh says, "well, she's still in charge," as indeed she was, and we were all comforted to see that.

Among her written requests were for her pink waterman pen, which she wrote was in the right drawer of the rolltop desk. She wanted me to make sure it was full of green ink, which would be in the opposite drawer. She also wanted her ipod, dvd player, computer which I was scolded for taking home, and the movie that recently came from Netflix, "Catch and Release." I don't know how well she'll be able to operate these devices, but if she's like she was today, she'll do OK, I think.

The other thing Calin wrote was, "Is anyone else coming by later?" The other visitors and I had already discussed that it was time for visitors, and she was more stable on the ventilator, so please, those of you who are free and in the area, feel free to visit any time of day or night. If the room is crowded, maybe wait outside or came back later. Also, Calin does appreciate some time alone and peace and quiet so it's not like we should have a round the clock watch or anything. At the UW Medical Center, you take the Cascade Elevators up to the 8th floor and ask at the ICU reception desk to point you to Calin's room. If you have any possibility of illness yourself, please recover first before visiting rather than bring any germs into the ward. Also, as noted before, no flowers are allowed, so just bring your minds' flower (or mind flowers) as Calin requested. S & L will pick up a guest book (which Calin confirmed in writing should be one of the hand-bound ones from Port Townsend that they sell at the Elliot Bay Bookstore). This should be on-hand and feel free to write notes in there to help Calin remember who visited and help us all see that she's got people coming by to keep her in contact with the world, even if she's a bit sleepy sometimes. We'll also collect her scribbled notes tucked into the book because they'll be funny to look over with her after she gets well. She will be given drugs that may cause amnesia and so she may not remember this time very well.

A few more details on what's going on. The PCP pneumonia was identified from the lavage (squirting liquid and sucking it back) done as part of the bronchoscopy . This pneumonia is much harder to deal with than the other kinds and the process of getting over it and having the lungs heal from the damage of knocking the disease is expected to take at least a week or two. At the 40-50 breaths per minute that she was doing on 100% oxygen, the doctors that her lungs could not hold out too much longer. And if they got tired then there was the potential to have her brain go without oxygen and in the words of one doc, she might no longer be the Calin we know, even if she did make it through such an experience. The ventilator, on the other hand, takes over the effort of moving the air in and out and allows her to take slower deeper breaths than she could on her own. Calin was presented was a clear list of benefits and a frank list of dangers associated with going on the ventilator. Calin then let the doctors leave the room to discuss with the family. We all said a few words and then Calin said, "Let's go for it."

This morning, she was tolerating the ventilator so well that she was allowed to be less sedated, but we were all told that if she starts to struggle with the breathing aparatus or the tubes then she will be given enough sedation to make it comfortable. This can include drugs that will temporarily paralize her to keep her from struggling. Thus, if you visit, please do not be disturbed if she is not able to communicate directly to you. This does not mean she won't be able to hear or benefit from your words or presence, however.

The combination of the cancer in her lungs and this bad type of pneumonia is quite serious. The doctors think she has a chance, though, so please do what you think will make that chance turn out for the best. These are good doctors, who Calin and I trust very much. She also has a full time nurse dedicated exclusively to watching her and helping her feel comfortable and feeding her brown goo through the nose tube. The nurses we've met so far have been great. They can also probably help visitors know what's going on if you have questions.

I've got my family in town who are helping me out with a variety of things, so the best assistance I could ask for from you blog readers is to keep Calin in your thoughts and heart and help each other help her.

News Trending In the Direction We Wish . . . and News Trending Not really direction We Might Wish

Yesterday afternoon I went in for my first follow-up appointment for the full brain radiation had did with Dr Jason in May. It was significantly better. I know have predisposition to exit the vast, bet neverytheless confining confinement to King Count.

But first, so I truly appreciate my freedom, I am going to spend 8 or so days intubated in room 8226 of the UW ICU while they pump me full of drugs and antibiotics and keep me under 24-hour surveliance. I will be doped up, somnomnolent, probably not too coherent. I will be quite unlikely to take calls, emails maybe okay. You see, while I'm working thruough PCP pneumonia, I probably won't have developed my social skills to there usual sparkling sheen.
Please forgive me snd stay tuned! I willm ask Ian to update a few time.

Anyway, prayers this time would be MOSTS appriated! Turns out most ICC can't flowers, but Ill thnk about all of your mind' flowers and be strengthened

xox

Hospitalized

Well, my news from the MRI scan with Dr Jason definitely showed things trending in the direction that we wish. Even the large tumor in my cerebellum has shrunk by maybe 5 mm, which is an excellent sign. We didn't take any time to talk prognosis at at this point, however, because Jason and Dr Spect had heard about my bad night (lika a resposible patient I called my nurst first think ytin the morning), and after much discussion beteen the two, they deceided they could not rule out a pulmonary ambullism.
As this could haver serious help reprecissons, it was deceded Iwould immediately be sent into the ER a the Universty of Washington. There, they gace me a chest CT and maybe a couple X-raye, and the put me on supplemental oxygen, and I was in heaven.
Tuns out what I have is pheumonia of some sort, not a blood clot (been lots of tests to determine which sort), and they wanted to keep me here to dermine which sort and there have already been a couple times when it's been VERY LUCKY I was here and not a home. I mean, I think i probably wouldn've lived through anythihg at hom but still, the support group was nice.
Ayway, sighning off. The Ambien seems to be working well :)

3:00am Demons

Anne Shirley, the "red-headed bitch", as I've heard PE Islanders are wont to call her these days, talks in most of her books about 3:00am troubles that wake you up and make you think the world is coming to an end. I know this because I've read all the books—and still do, particularly when I'm in need of some good ol' fashioned cheering up. Anyway, I'm having a 3:00am trouble myself right now, and it's scared me enough that I've called the poor, probably overworked oncologist on call to talk about it. While I'm waiting for my page to her to be returned, I thought I'd share another part of this experience that isn't so fun (since the constipation has been, blessedly, absent for the last 5 days, I had to come up with something, you know?).

Anyway, starting maybe yesterday, maybe evening of the day before, I've had three or four completely unexpected, unprovoked (by choking or anything else) coughing fits. Now, when your lungs are at low capacity, coughing is really hard, because it takes a lot of breath. I guess it's also really hard to stop because of not having enough breath—at least that's been my experience. And my cough has also been completely dry and unproductive, so I just don't feel like it's doing any good. And it also seems to end up stimulating some phlegm production, which happens about 10 or so minutes after the coughing jag, and phlegm is hard to expel without, well, coughing again.

This particular night I developed a coughing jag about 1:00am. I was reading a book sent by my friend Anne (not the author), A Horse of Her Own, by Anne Wedekind (about girls and horses and a boy and a triumph), lying in bed where I spend the bulk of my time these days, and I suddenly started to cough. This went on for several minutes, until I was finally able to get my diaphragm under control. I finished my book, waiting for my cough nerves to quiet, then shut off my light and tried to sleep. No such luck. The only way I could keep from starting up coughing again was to take quick, shallow breaths. I propped myself up on some pillows to see if a lounging angle helped me stop panting, and it didn't really. I would drift to almost sleep, strange visions swirling through my mind, but then I would moan, or start to say something in the back of my throat related to my visions, and I'd be right back awake, panting.

I finally got scared about it—that's the thing about 3:00am—things seem scarier if they're already a bit inexplicable and scary—and got up and called the oncologist on-call. She was very sweet, and seemed to think that I might just have picked up a bit of a bug—as always, one is going around. We agreed that sleep was the most important thing, so I took a Benadryl (should kick in any minute now—much slower when it's not being infused in liquid form directly to my heart), and I'm going back to bed as soon as I'm done here. I don't have any unexplained swelling, though, so it's probably not heart-related; it doesn't seem likely that a medication is causing this; I don't have a fever (to speak of, but it has been 99.5 for a couple days, which is, come to think of it, high for me who is normally at 97.6). I wonder also if the cancer treatments are making the lung mets swell a bit and so breath and all it encompasses is simply a little harder. I will call Dr. Specht's nurse tomorrow and check in with her.

Okay, back to bed. Anyone awake right now, wish me luck.