Friday, July 31, 2009

DAY +58: Steady as She Goes

Spoke to Bob for about 10 seconds from the road. He said "She's fine." That's all I know (about Susan's present condition) and all I have for today. Presumably I will get (and so, so will you) a fuller update tomorrow, so check back in.

Thursday, July 30, 2009

DAY +57: Home Alone

The fact that Cici, Charley, Susan, and Bob were all comfortable with a soft hand-off today, i.e., Susan being alone for two hours between the departure of the "C" Team and Bob's return, is a positive. Susan actually called me during that time (guess she was lonely) to point out some minor corrections/explanations with respect to previous blog entries. So, for the record . . .

Per yesterday's post, Susan's white and red counts were in fact within normal range, and not, as I had erroneously reported "close to within normal range."

And regarding the post with the pictures (July 26), Susan wants you all to know that she was not channeling Diane Keaton. In fact, she was so dressed, or overdressed, because (1) she was cold, even though it was a hot, sunny day and (2) she can't be exposed to the sun. My take is that she could have worn a longsleeve sweatshirt with a hood + the oversized shades and one of her surgical masks and been even more covered, if with less flair. My Diane Keaton wannabe comment stands.

As for today, she had been feeling a little "yuchy" -- the usual intermittent stomach pain and periods of nausea. She's taken some medications for each and it makes a difference, enabling her to feel well enough to be active enough to get various little things done (e.g., catch up on the blog entries so she can quibble with her brother). She says she has been eating some, not a lot, but enough she thinks, and also keeping hydrated. Wonder what culinary masterpiece Bob will whip up tonight. As always, we'll wait to see what tomorrow brings.

NOTE: I'll be traveling tomorrow and my blog post is likely to be late, probably around midnight, unless one of the other 4 people (Callie, Charley, Bob, Susan) designated as authors for the blog beats me to it.

Wednesday, July 29, 2009

DAY +56: Dr. Soiffer's Happy (so we are, too)

A good report from Boston:
  • white (8K) and red (4.07) blood counts are close to within normal range
  • platelets, which had been an issue due to the Valcyte (taken to prevent CMV complications), are now back into a normal range (148), even with the Valcyte
  • bilirubin is down to the top of the normal range (1.2 from 1.4), indicating that the VOD is diminishing, and the liver and kidneys are now functioning well
  • Susan's lost 10 lbs since last Friday, which suggests that the ascites is improving, as would be expected with the VOD resolving; consequently, her diuretic med is being dropped to once a day from 2X -- a big YEAH for one fewer pill a day.
  • with respect to her cough, the X-ray (from last Friday) did show some fluid in the right lung, which Soiffer sees as likely being an extension of the ascites fluid build-up; he's watching it but is not overly concerned at this point, as pretty much everything seems to be moving in the right direction
  • BOTTOM LINE: Susan is now just about back to where she should have been a month ago if all the complications hadn't set in; but she does look to be back (although she still complains of ascites pain), and Soiffer's pronounced himself "very happy" with her condition.
  • Next Boston visit is scheduled for a week from Friday, when, with Dr. Soiffer being away, Susan will see Nurse Amy
The steak that Charley was promising to grill last night he indeed did grill. Not only that, Susan ate some of it, along with carrots and mashed potatoes, for dinner, and Cici says she has been drinking a fair amount of water. Keep those kidneys flushed! Today it was the usual hard boiled egg and toast for breakfast, some cheese in the afternoon, and Cici is making a chicken dish for tonight. Tomorrow you can learn how it all turned out.

Tuesday, July 28, 2009

DAY +55: a Better Day

Not a lot to report, except to say today was definitely better than the last couple of days have been. Why? Who knows. Susan spent time outside consulting on the landscaping with Diane S., her landscape lady (ours, too, actually). She ate toast, PB&J sandwich, and is poised to have some steak that Charley is now grilling.

Cici came up today as well. She and Charley will be the transport, support team, and honor guard for Susan's roundtrip to Boston tomorrow. With the Tour de France just finishing, you could think of them as her domestiques. As soon as I get word from them about how the DFCI visit went, I'll post the news to the blog, so come back tomorrow to learn what the tests show and the doctors think (is that last an oxymoron?)

Monday, July 27, 2009

DAY +54: Like Yesterday, then Better

See yesterday's post for how Susan was feeling today until late afternoon, when she decided to try some pharmacological intervention. It's helped, and she's feeling better this evening.

She says she ate pretty well at dinner -- pasta (orzo) with sauce from a jar, which means Charley had to boil water, not over or under cook the orzo, and warm up the sauce (didn't learn whether that was a stovetop or microwave effort). Susan said it was tasty. Charley may not be ready to audition for a sous chef's job, but it is a step up from nuking a frozen item.

Let's see what tomorrow brings.

Sunday, July 26, 2009

DAY +53: First Sighting? + Report from the Front

The Lady behind the Foster Grant's is Cici; we are asked to believe that the figure in the orange hat, back to the camera, is Susan.


NOTE: to enlarge an image, doubleclick on it
(photo credits: Robert Siegel)

I actually saw Susan today. Maria, Charley, and I stopped in for about an hour (which was all she could handle) en route to a family gathering, understandably sans the Siegels, at cousin Leslie's and Rudy's.

It was not one of Susan's better days: she had more nausea than has been usual lately, and a general sense of malaise. Although awake, alert, and conversing normally, she did need to spend our time there lying down. The Diane Keaton wannabe from yesterday (check out the duds in the pix above) looks today as one would expect a person to look after a chemotherapy conditioning regimen for a transplant followed by the complications she's experienced. In other words, she is not yet ready for the swimsuit competition.

Nevertheless, the ascites now definitely appears to be improving (we could see that) and, as reported after the last Dana Farber visit, there are clinical signs that the VOD is abating. We just need to give this time and not be too impatient with the ups and downs on a day-to-day basis.

Bob left today with Callie and Nate to return to the City, but Charley has returned (Charley the son, not to be confused with his cousin Charley the nephew, referenced above as visiting earlier in the day; of course, he's also a son, but not Susan's). The current plan is for him, i.e., Susan's Charley, to remain at least through Wednesday so he can do the backing and forthing (actually, it would be forthing and backing) to Boston for the DFCI apppointment.

Those curious to see if Charley's culinary skills and ambition have progressed beyond his repertoire of frozen dinners, as well as those who are interested to know how Susan fares tomorrow, should tune in to the blog tomorrow evening when we will tell all.

Saturday, July 25, 2009

DAY +52: Bob's back, Cici's gone, Susan remains

Actually, Callie and Nate are up for the weekend as well, with my source for today's report being Callie, as Susan and Bob were upstairs re-watching the later episodes of Mad Men. Meanwhile Callie and Nate were downstairs watching some earlier episodes in an attempt to catch up. Mad Men Mania.

There's really little news of note. Susan may not be quite as good today as she was yesterday -- more nauseous and so less interested in eating -- but this is a normal day-to-day fluctuation and not significant. They were about to grill for dinner. Maybe Susan will have a bit of burger.

May tomorrow's posting be equally uneventful.

Friday, July 24, 2009

DAY +51: a Decent Report Card from DFCI

Today, Susan saw Amy Joyce, Dr. Soiffer's Nurse Practitioner, not Dr. Soiffer. This is good because Nurse Practitioners and Physician's Assistants are almost always more informative and more fun to talk with than the physicians they support. Here's what Susan learned:
  • blood counts are decent
  • the platelets are still low (attributable to the Valcyte Susan is taking as a protection against CMV infection), but not so low as to be a concern or require an infusion
  • bilirubin, which we have been watching as a marker for the status of the liver and so Susan's VOD condition, is about the same, that is to say elevated; however, today's ultrasound indicates that the portal blood flow reversal, a feature of the condition, has reversed back to normal; it's fair to expect now that the VOD is beginning to subside and that the ascites will follow (and, of course, that the bilirubin levels will move back towards normal)
  • Nurse Practitioner Amy also says that, based on palpating and appearance, the ascites now looks to be improving, a development corroborated by the fact that Susan has lost another 3 lbs since Monday
  • feeling cold all the time, which is one of Susan's complaints, is, according to Nurse Amy, a pretty usual thing ("we see that all the time," she said) and not cause for concern
  • the chest X-ray results were not available in time to review before Susan left, but Amy listened to her lungs and said they sounded fine and not to worry about the cough
All things considered, it was a good report. Amy did remark that Susan looked a lot better than the last time she saw her. Of course, the last time Susan was hiding under a blanket curled into a ball and closer to comatose than alert. The next DFCI visit is scheduled for Wednesday, 7/29. Many thanks to Cici for driving Susan forth from Spencertown and back again.

Thursday, July 23, 2009

DAY +50: Steady as She Goes

Top Line: Today was like yesterday (only the details have changed); tomorrow it's Boston again

Today's news is not materially different than yesterday's, so there's really no need to read further, unless you want the specifics of the day, which are as follows (per Cici):
  • the activities of the day included organizing stuff, with Susan actually working some alongside Cici; I don't know what the "stuff" was or how it was organized, but Susan has long had a compulsion for this kind of activity, so I assume it gives her satisfaction (does she actively enjoy the process, or would it simply cause her distress not to organize stuff? I don't know, and I've been her brother since 1948), and it's a good thing that she's up to the task now
  • Susan also met with the architects (two of them); at least they claimed to be the architects -- they were masked, as visitors must be; don't know what occasioned the consultation but, again, it's good that Susan is up to being involved in this kind of activity
  • Regarding today's menu:
    -- breakfast: toast and banana
    -- lunch: egg salad sandwich
    -- potassium fix: today they tried mixing it into applesauce -- at least that avoids the sacrilege of spoiling a perfectly good Ring Ding or Twinkie -- but they're still experimenting with the least objectionable way of getting the potassium down
    -- dinner: leftover hamburger & Velveeta casserole is planned; Susan says it was good
  • Cici says Susan is drinking well and often, going to the "loo" a lot (Cici's term); that's good news; hopefully, tomorrow's DFCI visit will produce some metrics to indicate that the ascites is receding
  • Susan has been coughing some and a chest X-ray is planned for tomorrow, along with the ultrasound, but the cough is not at a distressing level and the X-ray is just precautionary
  • They finished season 2 of Mad Men last night and will probably just watch regular old television tonight
So much for Cici's report. I also got to talk with Susan and asked her what words she had for all of us out in her blogosphere. It was simply, "tell them 'hello'." She does admit to moving around a little bit better and spending a lot more time up and around. She also allowed that the ascites pain, nausea, and a few other complaints seem to be less severe in frequency and intensity but it was a totally random matter as to when any particular problem would strike. Tomorrow is their visit to Boston for tests and a consult at Dana Farber. We'll know soon enough what that tells us.

Wednesday, July 22, 2009

DAY +49: Cici, Bonjour; Charley, Adieu

And the guard changes yet again. Cici will be with Susan through Saturday, by which point Bob will have returned. She'll be the one to take Susan to her 1 PM Friday appointment at DFCI in Boston.

Here's what Cici has to say about her friend Susan:
  • first impression: she looks "really really well" compared to the last time Cici saw her (of course, that was when Susan was sleeping 20 hours/day)
  • her coloring is good and she looks a wee bit less bloated (ascites improving?)
  • Susan herself admitted to "maybe . . . feeling a little better"
  • The two of them sat outside for a good bit and Susan had Cici weeding in the garden, throwing stuff out in the dumpster, and moving things around [editor's note: probably the same things she had Charley move the day before]
  • Susan also spent a fair amount of time talking with Tom, their key construction/handyman guy, and Diane, their landscape architect, so she's clearly engaged with what's going on with the property
  • breakfast was a waffle; lunch, a PB&J sandwich; then a late afternoon snack of a hostess cupcake laced with a broken up potassium horse pill; for dinner Cici is planning on a hamburger casserole with Velveeta (her mother's recipe -- sounds like an ultimate comfort food) . . . I must note, the Siegel men don't cook like that; thank God for microwaves
  • Tonight they're planning on a Mad Men episode
This is all sounding good, but do bear in mind that part of what makes Cici such a delightful person is her cheery, optimistic view of the world, so some discounting of her impressions is probably prudent. Nonetheless, it's a positive picture, certainly for today. As always, let's see what tomorrow brings.

Tuesday, July 21, 2009

DAY +48: Mother and Son

It's getting to be like Buckingham Palace . . . yet another Changing of the Guard: Bob's gone back to the City to "take care of business," but Charley's come up to the country to be his mother's companion, chef, and general helpmate. Susan was busy watching television (more about why below) when I called and I didn't want to disturb her, so here's the report from Charley:
  • breakfast was a hard-boiled egg and a piece of toast . . . so what's new?
  • Susan has been drinking a reasonable amount, alternating between water and Orangina
  • Susan is now taking potassium pills, prescribed due to a deficiency diagnosed on her visit to DFCI yesterday. These pills are sized for horses . . .
  • . . . so, her mid-afternoon snack -- remember, she gets up late enough that her breakfast is more like brunch-time, but I don't call it brunch because brunch is fun and a hard-boiled egg is not -- anyway, returning to the thread, her mid-afternoon snack (unless you'd rather think of it as a late lunch) was a Ring Ding, spiked with pieces of her potassium pill, which had to be broken up for ingestibility; it's certainly a shame to ruin a perfectly delightful Ring Ding that way, but she does what she has to do
  • Dinner is probably going be store-bought frozen pasta or pizza, or if Charley decides to stretch himself and Susan is interested, a grilled cheese sandwich
  • the big excitement of the day, and the reason I didn't want to drag Susan from the TV, was the installation of a satellite dish for DirectTV service; This gave Susan something to do, watching the workmen in the afternoon, and now it's giving her something to do in the evening, watching a clear TV picture with a set that gets premium channels
  • and while Susan may not have been up to "rearranging the furniture" herself, she was up to making the aesthetic decisions and delegating the donkey work to Charley, who had to do indoor and outdoor moving (and re-moving) of stuff, at his mother's behest
As usual, we are all interested, I am sure, to see what tomorrow brings

Monday, July 20, 2009

DAY +47: to Boston and Back

Top Line: undramatic results -- nothing notably bad, nothing especially good

Here's what I know about Susan's current condition and what happened at Susan's DFCI visit today:
  • white and red blood counts OK
  • platelets low now, but it appears to be related to a specific medication and is not a cause for concern (or infusion) at this point
  • VOD status is indeterminate: the bilirubin levels are about the same and it's not possible to say whether the VOD is in the process of resolving or it might get worse; Soiffer seems to think it's more likely that the condition will resolve itself slowly over time
  • Susan continues to be very uncomfortable with her ascites, and at times it is downright painful, but it is not considered serious enough to justify the risks of paracentesis (i.e., a needle and tube to drain the fluid), given Susan's compromised immune system; again, as the VOD improves, so should the ascites
  • Susan actually lost 8 lbs. since her last weigh-in (but I don't know when that was); how much of this loss is due to vanished lean body mass and how much to disappearing ascites fluid we can't say
  • to net out Dr. Soiffer's position: he is not dissatisfied with Susan's condition right now (given the setbacks that she's had), but he isn't thrilled by her progress, either; he is expecting that improvement will continue, but slowly
  • Susan informs me (first time I've been able to speak to her directly in days) that the nausea is still an issue, episodically
  • She is, however, spending her days mostly awake now, which is a welcome reversal
Susan will return to Boston for another checkup this Friday. It will include an ultrasound (kidneys, and I think liver) as well as the usual blood workup and consult with Dr. Soiffer. On the domestic front, for those who are curious about Bob's culinary feats, last night it turned out to be frozen pizza (remember, she isn't allowed to have the fresh stuff from a pizzeria, or any restaurant food for that matter). They have one more episode to go to finish the second season of Mad Men. If they're not too tired when they get back to Spencertown (they didn't leave Boston until 6 PM), they'll polish it off tonight. We'll know tomorrow.

Sunday, July 19, 2009

DAY +46: Today, so so; Tomorrow, Boston

Today Susan was noticeably more uncomfortable than she has been over the last several days. No idea why. Bob reports that she also feels cold all the time (but this is not a new symptom). However, she has been staying awake pretty much all day -- attribute it to country air, to medication, to a place where she can potchky around, designing and redesigning, attribute it to whatever -- we'll take it.

Tomorrow S & B go to Boston for the day for a routine follow-up, with bloodwork, tests, and a consult with Dr. Soiffer. We're all anxious to learn the test results and what Soiffer has to say.

On a lighter note, the Siegels have now finished 4 seasons of "Coupling" DVDs (thanks to Ann, or is it Anne, and Michael for supplying same). Bob hadn't yet planned out tonight's viewing schedule as of a few minutes ago. You can find that out tomorrow, when I'll learn what they did tonight, along with the outcomes of the DFCI visit. You know where to click.

Saturday, July 18, 2009

DAY +45: Nothing New

Everything is pretty much the same:
  • more time spent alert and awake (of course, meds help)
  • nausea continues to be less of an issue
  • ascites continues to be painful, occasionally requiring pain medication
  • eating a little, drinking well enough, with intake levels clearly being limited by the ascites
Susan did spend some time today organizing the kitchen. I doubt it was heavy duty, but certainly that's not something she would have been able to do at all a week ago. When we get the next blood results, particularly the bilirubin level, we may be able to judge progress with her VOD, which, again, is the major determinant of her ascites. Expect more days of ho hum news until then.

Friday, July 17, 2009

DAY +44: Holding Steady

Today's bullet points:
  • breakfast al fresco (she went outside and she ate)
  • no lunch per se, but some cheese and cracker snacking
  • generally more awake/active today
  • nausea less of an issue (but is this a trend or just a trough in the rolling waves)
  • ascites bothersome enough today to occasion pain meds
  • and, just to show that Susan is still Susan, she did some potchky-ing around (arranging) with the pillows outside
In short, she's doing OK, given where she's been. Presumably she'll watch more Mad Men episodes tonight.

Thursday, July 16, 2009

DAY +43: the Country Life

Not a lot to say. No setbacks, but progress will probably be slow enough so as not to be noticeable on a day to day basis. My hope is that we're into a boring phase. Nevertheless, here's today's news, such as it is:
  • Susan had a hardboiled egg and a slice of toast for breakfast and a milkshake in the afternoon. Bob's planning mac and cheese for dinner
  • She sat outside by the pool for a bit and they also drove down to the pond
  • She'll probably watch an episode or two of Mad Men tonight
  • She has spent more time awake today, but who can say to what extent this is a consequence of the novelty of a new location with more room to roam and more to do vs. some improvement in her underlying condition
  • Her principal complaint right now is the discomfort from the ascites, which is considerable
It's probably fair to think of Susan at this point as a political prisoner under house and grounds arrest. Come back y'all and visit the blog again tomorrow for more (we hope) non-news.

Wednesday, July 15, 2009

DAY +42: Bye, Bye Boston . . . BUT

Top Line: Susan's condition is stable to probably improving, enough so that she can undertake a change of scene

Yes, the Siegels are leaving Cambridge/Boston today for the country home in Spencertown, NY, and we are all happy about that. However, this is not a "proceed to go and collect $200" card. Rather, it is a recognition that she has been stable for several days and doesn't need to be tethered to Dana Farber at this point. Dr. Soiffer has sent copies of Susan's files to, and conferred with, trusted colleagues in Albany, so the care will be maintained, and, at need, Boston is only 2+ hours away (think of it, in terms of time/accessibility, as a rush hour crosstown taxi ride).

So, for those of you who commented yesterday about now being able to be in touch more directly, exchanging emails and what not . . . sorry. At this point, Susan is still not sitting up to focus on the computer and, as you should have gathered from yesterday's interview, she is not feeling in a particularly communicative mood. As that changes, she'll reach out and/or we'll let you know.

Here's the exit summary of her medical condition and consult with Dr. Soiffer:
  • blood counts and platelets continue to be decent and there's no fever
  • bilirubin is still elevated and hasn't come down this week, indicating that the VOD, although of the mild variety, remains an issue and must be watched closely, as severe VOD is a very serious condition
  • the ascites continues unabated and most uncomfortable -- the weight gain remains the same, and those pounds (plus more, given muscle mass loss on her near starvation diet over the past 6 weeks) are all accumulated fluid in the peritoneal cavity; this will likely be a multi-week resolution process and dependent on the VOD resolving
  • Susan remains extremely fatigued and still definitely spends more time asleep than awake, but she has been somewhat more alert, with longer periods of wakefulness, over the past few days; it is expected that her energy level will increase as the VOD diminishes
  • she continues to have bouts of nausea and continues to take medications for same
  • MOST IMPORTANT: bear in mind that the gravest concern for transplant patients is graft versus host disease (GVHD - remember, this is all described at the bottom of the blog and in the resource links to the side), and Susan will remain susceptible to this condition for another year or so; the peak danger period is generally 3-6 months out from Day Zero (she's 1+ months out now), but it can strike at any time and anywhere, even in Spencertown or on East 22nd Street
OK. Cici returned to NYC earlier today. Bob and Charley should be just about finished with loading the car by now. They need to make a stop at DFCI, and then it's on, through Boston rush hour traffic, to Spencertown, with Susan clutching a pillow to her stomach to cushion her ascites from the road bumps. Then she'll go to sleep directly or try to watch an episode of Mad Men, season two, and fall asleep almost directly. Then we'll see what tomorrow brings.

Tuesday, July 14, 2009

DAY +41: Interview with SKS

The reclusive patient, Susan Kargman Siegel, consented to an impromptu interview that was completed just moments ago. Here's the transcript:

Blogster: How are you feeling?
SKS: I feel a little stronger, but my stomach still hurts
Blogster: Sounds like the ascites. Are you taking pain medication for it?
SKS: No. It hurts, but it's not that bad
Blogster: Now that you've started on the diuretic for the ascites, are you drinking enough?
SKS: Yes
Blogster: Would you elaborate? Can you quantify that?
Blogster: What will you miss most about your Boston experience?
SKS: Nothing . . . What Boston experience?
Blogster: What are you most looking forward to?
SKS: Not being in the apartment and seeing the house
Blogster: Would you be willing to be photographed so your fans can see your face?
SKS: No.
. . .
SKS: I'm sorry, but I'm not feeling very talkative. I want to go back and watch my show now.

Not very informative, but it was the best I could get from her. The show, by the way, is the second season DVD collection for "Mad Men" which Cici walked a mile and a half each way to buy. (Did I mention that the Kendall Square apartment is in no man's land?)

Susan had a hard boiled egg and a slice of toast for breakfast (what we would call lunch in terms of the time of day it was consumed). She snacked some on cheese and crackers this afternoon, and Cici is making them meatballs and pasta for dinner.

Bob plans to get back up tomorrow to meet them at the 1:00 PM appointment with Dr. Soiffer. The expectation is that she'll be given clearance to clear out. We'll wait and see.

Monday, July 13, 2009

DAY +40: Dr. Soiffer is "Very Happy"

The new apartment:
guess this is from the living room across the dining area and to the kitchen, with the entry door beyond

Top Line: Good blood count and platelet numbers today; Susan appears to be moving in the right direction

According to Charley, Dr. Soiffer pronounced himself "very happy." I hope that is with regard to Susan's condition and progress, as opposed to, say, him lucking into a good parking space this morning.

For the medically inclined among you: WBC - 9.9, RBC - 3.86, platelets - 283. These are good numbers for this stage of the game. Soiffer also characterized the VOD as a mild case. For the ascites, which really is very uncomfortable and limits Susan's eating and drinking, he has now prescribed a diuretic. Of course, the onus will be on Susan to drink enough so as not to dehydrate. This will be something of a balancing act, but as the ascites discomfort diminishes, thanks to the diuretic, Susan should be able to drink more to offset the fluid loss.

Susan has spent more time awake today and seems to be more alert and connected. She was watching junk television when I called; we'll take it over sleeping.

The next scheduled Dana Farber visit is Wednesday, at which point Dr. Soiffer thinks he may be able to release Susan from durance vile (that means: give her the OK to leave Boston). Of course, we've been here before, so let's not count chickens, but it does sound encouraging. We'll see what tomorrow brings tomorrow.

Sunday, July 12, 2009

DAY +39: Mutatis Mutandis

What does that mean? Loosely, the caregivers and the location have changed, but everything's really still the same. Callie and Nate have gone, but Cici and Charley are back in charge. Susan's traded a Boston hospital room for a Cambridge apartment, but her condition is still as I've been reporting it:

-- ascites discomfort
-- nausea that comes and goes
-- extreme fatigue.

However, she's eating a little and drinking some . . . we hope it's enough to keep her out of the hospital, and she's no longer in real pain (as opposed to oscillating levels of discomfort).

Tomorrow afternoon it's DFCI again. Let's see what her numbers have to say, and Dr. Soiffer, too. Tune in tomorrow PM to find out.

Saturday, July 11, 2009

DAY +38: She's Been Sprung (again)

Top Line: Susan is out of the hospital and resting in the Cambridge apartment

At least I thinks so. Have not been able to raise Bob or Callie via cell since this AM, so the provisional news is that Susan was released early this afternoon and is now in the Cambridge apartment. Yeah!!! (I think) If I learn anything significant or suprising, I'll post it.

Understand that this does not mean that everything is hunky dory, or peaches and cream, or even beer and skittles (not to mention fish and chips), but it does mean that she's making progress, at least in the near term.

The fatigue is not as severe (medication adjustments are helping, but also, I hope, her improving condition), although she is still very weary and sleeping a lot. The ascites is still an issue, but the VOD seems to be improving and the ascites should follow. The medical team must feel that she is now capable of eating and drinking enough to stay out of trouble (as opposed to those of us who eat and drink enough to get into trouble). I'm sure Callie will hound her about intake as necessary.

Callie and Nate leave Boston tomorrow, but Cici will be going up to stay through a hoped for departure from Beantown (more accurately, Cambridge) on Thursday. Don't worry. They'll pass the baton; she won't be left alone. Bob's planning to go back up Wednesday evening. Susan has DFCI visits/consults scheduled for Monday and Wednesday. More coming when I know more.

Friday, July 10, 2009

DAY +37: a Little More Progress

Today's bullet points:
  • Susan is undergoing an MRI as I write-- this is a precautionary test at this point, not an indication of a serious condition about which more diagnostic information is needed; of course we'll let you know if anything concerning turns up
  • The tests for certain viruses that were potentially serious problems have finally come back and they are negative
  • Susan does have BK virus, however, but the team is not alarmed, as it should be manageable
  • The ascites continues, but as the VOD improves (and bilirubin is lower today, suggesting that is what's happening) the ascites should resolve; diuretics, which can be useful in treating ascites, are problematic, given Susan's challenges in taking in enough fluids; if the ascites becomes too much of a problem, there is the option to remove the fluid buildup via paracentesis, but better not to be sticking needles into Susan unless really necessary
  • She has eaten better today; she took a longer walk; and she is off the IV line -- all good -- but she'll really need constant encouragement to consume enough food and liquids
Believe it or not, there's a chance Susan might be released from the hospital tomorrow, which suggests that, despite the remaining issues, she is making enough progress now not to be dependent on a hospital setting. Maybe there'll be an opportunity for some redecorating in Susan's near term future? Let's hope so.

Thursday, July 9, 2009

DAY+36: Tentative Answers; Slight Progress

Top Line: Root cause may be VOD; Susan a little more alert today

Susan likely has VOD (veno-occlusive disease), which causes liver problems and likely explains the ascites and the extreme fatigue. Again, I say "likely" because a definitive diagnosis requires a liver biopsy, which the team does not believe is appropriate at this point. VOD often resolves itself over a period of several weeks with supportive therapy. However, if the condition progresses towards a severe stage (which is NOT happening at this point), direct treatment options need to be pursued. We need to watch and wait.

Susan actually got out of bed for a short walk today, with Bob's prodding, and he says she seemed to be a little more alert, although she is still spending most of her time sleeping. She also had a psych evaluation today -- which is a standard procedure under these circumstances -- with no alarming conclusions.

A couple more tests/procedures are still pending, plus results from the virus screens, but otherwise it's now a matter of continuing supportive therapy and watching the VOD for signs of change (bilirubin levels being a key indicator) and, hopefully, improvement. The near term goal is to get her off of the IV and eating and drinking enough on her own so that, assuming the VOD is clearly moving towards resolution, she'll be able to leave the hospital.

Bob left Boston this evening for Spencertown and then the City to manage affairs, but Callie and Nate are en route to Boston and will hold the fort through the weekend. Again, let's see what tomorrow brings.

Wednesday, July 8, 2009

DAY +35: Mostly the Same

Top Line: kidneys may be improving, but liver now seems to be an issue; the fatigue remains

There's nothing definitive to report. I'm using words like "may," "might," "seems," "likely," "possibly" because nothing conclusive has been determined.
  • We're happy that the kidneys seem to be moving towards normal function, but it's too soon to be sure.
  • We are not happy that the liver, and conditions likely related to it, are not behaving properly. This area is being explored, with more tests/procedures to come in a diagnostic sequence, if/as needed, but it's premature to say what's going on.
  • It turns out that the tests Susan had for certain viruses that may be at issue take several days or more to provide useful results, so those are still pending.
  • The fatigue persists.
Bob continues to be impressed with the nursing, so that's a good thing, and we know the right and best doctors are on the case. Let's see what tomorrow reveals.

Tuesday, July 7, 2009

DAY +34: Nothing Definitive - Wait and See Mode

Top Line: kidney issues, per the ultrasound, but hydration may resolve them; Dr. Soiffer wants to see what changes, and what clarifies over the next 48 hours

Medical update:
  • Susan's kidneys are backing up - the flow is in the wrong direction, per the ultrasound
  • however, the hydration she's been receiving, by infusion and by mouth, is beginning to have a positive effect; it's too soon to be sure that this is the answer, but Dr. Soiffer wants to give the kidneys more time to right themselves before determining that some other intervention is needed
  • some of Susan's symptoms, including the ascites, are suggestive of liver issues, but tests, bilirubin levels do not reveal any liver problems; the thinking is these matters will likely resolve themselves in a few days
  • re. Susan's fatigue: the two most likely causes are (a) certain viruses, and these are being tested for, and/or (b) sustained use of narcotic pain killers, which build up over time when the system's flushing mechanisms cannot keep up with the intake
  • Vicodin, then, may be the culprit, at least partly (how come Dr. Gregory House doesn't sleep 20 hours a day?), so it is being discontinued - we'll see
  • Susan, by the way, is on a regular medical floor; no beds were available in the oncology ward, but she does have a private room and Bob says the nursing is first rate. He's satisfied with the situation.
Bob called Linda Drury yesterday about Susan's travails and her need for a 3rd re-admission. Linda, remember, is the marvelous PA for Dr. Lee Nadler, Susan's primary oncologist at DFCI and a senior VP there. Today, Susan received well wishes and an orchid from Dana Farber's CEO. Coincidence? I doubt it. Talk about her case having high visibility. Of course, as a recent transplant recipient, she can't take delivery of the orchid. Duh. I mean, if anyone should be aware of this restriction . . . . Still, it was a very nice gesture. And Soiffer mentioned that Nadler called him today about Susan's situation. It certainly looks like the right and best resources will be brought to bear, as indicated.

The Mass Ave apartment is now history. Bob moved them into an apartment in Kendall Square, Cambridge today. I hope Susan will be able to join him there in a few days, and that they won't be there long enough to need to change the sheets.

Let's see what tomorrow brings.

Monday, July 6, 2009

DAY +33: Back in the Hospital

Top Line: Susan being re-hospitalized to ensure adequate fluid intake and to run tests

The upshot of today's visit to DFCI:
  • white & red counts and platelets at OK levels
  • ditto for liver function tests
  • kidney function tests, however, revealed abnormalities; an ultrasound is planned to rule out blockages and provide other diagnostic information
  • without speculating on cause and effect re. the kidneys, Susan has not been taking in an adequate amount of fluids
  • hospitalization will enable infusions to bring Susan's hydration, electrolytes, and nutrients back to levels her medical team wants to see
  • Susan's extreme fatigue and excessive sleeping are beyond what is to be expected; the team will also run tests to try and determine cause and appropriate treatment
  • the ascites persists, too; we hope time in the hospital will enable the team to resolve that issue
Of course, we're disappointed that the report isn't better and we're frustrated by the unknowns. Hopefully, close observation will provide some answers and the treatments necessary to get Susan back on her feet and out of Boston. Meanwhile, the lease on the marvelously situated Mass Ave apartment is up and Bob is now in the process of moving to new digs in Kendall Square, Cambridge.

Sunday, July 5, 2009

DAY +32: Again, No Change

Same story: very tired, very weak, eating a little, sleeping a lot, still some stomach pain from the ascites, and back pain, because people over 39 get back pain. Vicodin helps some when needed, but it's not the answer. We'll have to wait and see what tomorrow's DFCI visit reveals.

Saturday, July 4, 2009

DAY +31: Still No Change

Susan has been eating, not a lot, but not in a desultory, minimalist fashion either, which is something. Today it was a hard boiled egg, some yogurt, some cheese, and likely some pasta for the dinner still to come.

There's no fever; the nausea comes and goes but it's not the problem it was. The principal complaints, beyond the fatigue which dictates 18 hours of sleep a day, give or take, are continuing stomach pain (likely the ascites), and back pain of the good (or bad) old fashioned variety, and so not likely a direct result of the transplant, but rather a collateral condition which has seized upon her inactivity and vulnerability to manifest itself. Vicodin to the rescue. It does seem to help.

The roof garden of their building offers a spectacular view of Boston's fireworks celebration (you all can watch same, with patriotic music from the Boston Pops, on NBC tonight). Unfortunately, because the views are primo, the crowds up top are large, so Bob will not hazard taking Susan up there, even if she's up to it, which she probably won't be. Nevertheless, tonight I believe there will be a touch of blue in Susan's blood to complement the red and white cells (yes, we always have thought of her, although untitled, as Nature's royalty, and rightly so).

For now, we'll take no change (over change for the worse) and a holding pattern until we can get information from her blood work and Dr. Soiffer consult at DFCI on Monday.

Happy Birthday, America!

Friday, July 3, 2009

DAY +30: No Change

Everything remains pretty much as it's been, except that Callie and Nate are up there now. The concern is that Susan is sleeping an awful lot. Unless something changes over the weekend, we'll likely just wait until the Monday DFCI visit to see what's going on. At that point, if not sooner, I'm sure Bob will push for answers about why Susan is spending so much time asleep.

Thursday, July 2, 2009

DAY +29: The Same

Susan remains pretty much as she has been the last couple of days -- extreme fatigue, some stomach pain from the ascites, a touch of nausea that comes and goes, and a few other minor things.

She does drink a bit and eat a bit (the four food groups: hard boiled eggs, PB & J sandwiches, frozen pasta dinners (partial servings, of course), and Hostess Twinkies, with the occasional banana thrown in).

Bob's back; Cici left yesterday and Charley today. Callie and Nate will be up tomorrow. Next scheduled Dana Farber visit is Monday.

Wednesday, July 1, 2009

DAY +28: Holding Pattern

Top Line: Today's tests OK; Soiffer satisfied with progress, but she's not ready to leave

The big news today was another DFCI visit, and these are the results:
  • blood counts decent: white - 7.2 (normal range), red - 3.3 (low-ish but not too bad)
  • platelets: 44, up from 19 on Monday, but still low
  • Liver function is normal
  • still some ascites (peritoneal cavity fluid accumulation), probably residual from liver issues
On the whole, Dr. Soiffer is comfortable with where Susan is at (easy for him to say), given where she's been. However, he does think it prudent to keep her on a short leash for a bit longer, in particular to make sure that the ascites resolves. He's on call this weekend, which is good, just in case. Susan's next appointment is Monday. Maybe she'll get her clearance at that point?

Nausea and diarrhea continue to be issues, but more intermittently, and not violently so. The significant pain has not been a problem for a week now. The extreme fatigue persists. Susan does continue to eat some and drink some. Her relationship with food and fluids is, at this point, while not exactly robust, at least not tentative and at risk of evaporating. Of course, that's with Cici preparing meals and snacks. Let's see what happens when Bob returns, speaking of which . . . .

Bob arrives in Boston tomorrow and Cici and Charley will leave. Another changing of the guard. Callie, fresh from her triumphs in Berlin, will be up with Nate for the weekend.

More tomorrow, of course.