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.

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.

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

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.

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.

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.

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.

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.

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.

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?

SKS: No

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!