Thursday, December 10, 2009

DAY +189: Good News

Short and sweet folks. I'm copying in the email text received from Dr. Soiffer today:

From: Robert Soiffer
To: Robert A Siegel
Cc: Amy Joyce
Cc: Susan Kargman
Subject: RE: Pet scan and Bone Marrow Biopsy
Sent: Dec 10, 2009 3:35 PM

By both PET Scan and Bone marrow there is NO evidence of CLL or lymphoma

There is a modest amount of residual fluid (ascites) still remaining in abdomen

OK. Of course, this is wonderful news -- the transplant has done just what we hoped it would do -- but don't go breaking out the bubbly just yet. Susan continues to have her "Y"-days, largely courtesy of the ascites, and there remains, and will remain for months to come, the risk of Graft vs. Host Disease. The various ways that this can present are to a greater or lesser degree uncomfortable or worse. The condition can generally be managed through, but not always, so we are hopeful but must remain vigilant. Susan's next DFCI visit is scheduled for January 4th. Look for the next blog entry that evening or the following day.

Wednesday, December 2, 2009

Day +181: a Good Report

Top Line: blood work and preliminary quickview of PET scan look good; awaiting bone marrow results and definitive reading of scan

Susan tells me that Dr. Soiffer was "quite happy" with her progress and told her, as he gave her results, "This is where you smile." However, let's not get ahead of ourselves as the full story isn't in yet. Here are some specifics:
  • white count is normal
  • LDH is normal
  • liver function is improved, although bilirubin is still slightly elevated.
  • the rash that Soiffer thought was GVHD may not be and he is referring Susan back to a dermatologist
  • Dr. Soiffer thought the PET scan looked good, but it needs to be interpreted by specialist for an authoritative assessment; expect that in a day or two
  • the dreaded bone marrow biopsy was difficult, but not horrendous (being drugged up helps some); it will be a week or so before results are available
  • if the scan and biopsy results support the promising readings on the blood work, Susan may be taken off the liver &/or anti-rejection (Prograf) medications; for now, the Valcyte (for CMV) continues
  • the next DFCI visit is scheduled for Jan 4
All in all, this is a good, although tentative, report card. In a week or so, when we have all the results in, I'll post again. Susan continues to have some better days and some that are not good, although the nausea and extreme stomach and core discomfort are now largely gone. Mostly it's a matter of continuing fatigue and some days that are just very yechy or yucky or whatever.

We did visit on Thanksgiving for desert and Susan actually looked quite good -- trim with all the weight she's lost and surprisingly perky (low light and makeup obscured the rash/blotchiness problem). If you didn't know, you wouldn't have known. Unfortunately, the day after was "the day after." Guess she dipped a little too deeply into reserves to be up for the holiday and all the preparations she did and then had to pay the price, but she has recovered. So, it continues to be an up and down affair, but the trajectory is positive overall. Remember though, there's a ways to go.

Back to you all in a week or so, and again after the January 4th Dana Farber visit.

Tuesday, November 10, 2009

DAY +159: Better here, Worse there = ?

Top Line: Susan's numbers are fluctuating, with some improving and some worsening. Tests in 3 weeks should give a clearer picture

The visit with Dr. Soiffer was somewhat inconclusive. I won't run down the specific results from the various tests, because too much seems to be changing in either direction in relatively short time frames, and then sometimes swinging back. Susan's next visit, scheduled for November 30, will include a bone marrow biopsy and a PET scan. Not fun, but that should provide a clearer picture. Incidentally, the visit will also coincide roughly with the 6 month anniversary of the transplant, which is a good time to take stock.

Some of the old nemeses are back to varying degrees: liver function issues with, perhaps, some ascites (certainly stomach pains), CMV, along with the skin/mouth issues, and this has required a re-introduction of some medications, all of which makes Susan feel worse. And, of course, the constant fatigue never left. In short, Susan's symptoms and complaints are consistent with GVHD, but the upcoming tests should enable Dr. Soiffer to be more definitive about what's going on.

That said, Susan is getting out of the house a couple/three times a week, although her forays are brief. Dr. Soiffer hasn't put any additional restrictions on her activities -- she can be guided by how she feels and what she's up for (but avoiding crowds, risk of infection, etc.) -- and he does feel she is stable enough to go three weeks until the next visit. So, while not an encouraging report, it's not really a discouraging report, either. After the visit on November 30 is when I'll blog next.

Tuesday, October 27, 2009

DAY +145: a Bit of Chop in the Water

Top Line: Susan is likely experiencing some GVHD, and it's being treated

Dr. Soiffer was able to see Susan's results today and to confer back and forth with Nurse Amy, who did see Susan yesterday. Here is the summary:
  • The good news -- the flow cytometry test, performed because Susan's neutracils and lymphocytes are out of balance, revealed no, repeat NO, CLL cells; in other words, the transplant is working
  • The other news -- Susan's persisting body rashes and facial blotching, along with a white coating in the mouth, are indicative of GVHD (Graft vs. Host Disease); normally this would be treated systemically with steroids, but see below
  • Also, Susan's liver enzymes are elevated again, which at this stage is another indicator of GVHD. She will have to go back on her hated liver pill, the one she believes was most responsible for her nausea; we shall see
  • Another old nemesis has returned as well -- CMV (cytomegalovirus) -- necessitating the re-introduction of Valcyte to Susan's meds regimen
  • Steroids, which would be indicated for some of her GVHD symptoms, can increase a proneness to infection, and CMV is an infection, which is why Dr. Soiffer is holding off on the steroids for the time being
  • Susan will have blood work done in NYC next week, and on the basis of those results the Boston team will decide if and how to adjust treatments
  • I will report via this blog as soon as we have Dr. Soiffer's assessment and direction, based on the blood work to be done; the date is uncertain at this point (maybe next Tuesday?)
  • Susan is scheduled to return to Boston in 2 weeks, on November 9, and the results of that visit will be posted late that evening
No, this is not the kind of glowing report we've been accustomed to the past few visits, but remember that GVHD is a common occurence and Susan is being watched closely and treated carefully.

Otherwise, how does Susan feel about being back in NYC and what has she been doing? The answers are "good" and "not much." The sojourn in Spencertown served its purpose very well, but it was time for a change of scene. Bob is now available seven days a week and he doesn't have to do all that driving. People can stop by to help out or just say hello when Susan is up to it. The Siegels have been able to eat out cautiously and sparingly. And Susan got to see her first movie since May -- they went to a 2PM showing of The Invention of Lying. There were four other people in the theatre, which was the idea. Of course, with these new test results, it will be prudent for Susan to curtail her already limited activity somewhat more.

Again, expect updates in a week or so after the next bloodwork, and then on November 9th after Susan's next Dana Farber visit.

Monday, October 26, 2009

"No News is" . . . No News

Susan went up to Dana Farber today, Bob driving, to see Dr. Soiffer. Unfortunately, Dr. Soiffer was out with what may be the flu. Susan did submit to her usual tests, but we need to wait for Dr. Soiffer to interpret the results. I'll post again when we know more. It may be tomorrow, it may be a few days.

Monday, October 5, 2009

DAY +123: Good Blood, Bad Tooth

Top Line: On the oncological front, Susan is progressing well; on the dental front, she's hurting after a tooth extraction today

Dr. Soiffer was not available today, but who needs or wants a doctor when there's a good nurse available. Nurse Amy was pleased with Susan's progress. Here are some details:
  • All Susan's tests/blood work looked good, except for the liver function, which is slightly out of range and needs to be watched but is not a cause for undue concern at its current level
  • Everything looking good includes potassium levels. Yea! No more horse pills, although a continued focus on bananas would be prudent
  • Susan was taken off Valcyte (prescribed to treat/prevent cytomegalovirus) in favor of a milder medication, so she may start to feel a little better on that count alone
  • Susan's rash, face and body, persists but its intensity and the discomfort it has been producing seem to be somewhat reduced; it is what it is and will be what it will be; continue to treat it with lotions and cremes
  • Susan is indeed cleared to eat at restaurants, provided they are bad restaurants with few patrons, but she must exercise caution, e.g., no salads, fresh fruits/vegetables (unless peeled/cooked), etc.
  • The good news/bad news story is that Nurse Amy cleared Susan to start using a toothbrush (about time! you would say if you'd been anywheres near her these past months), but the tooth extraction she underwent following her DFCI visit means it will still be a while before she can exercise her new permission
  • The next Dana Farber visit (and next planned update of this blog) will be Monday, October 26th
From DFCI, Susan and Bob went to see Dr. Maniscalco in Arlington, MA, in order to have an infected tooth (#30, for the orally fixated) removed. The less said and the less time spent thinking about dentist visits the better (no offense intended to Dr. Maniscalco, who seems to be very good). We hope Susan's recovery from this procedure will be no worse than such things usually are. Time will tell. As of this evening, it hurts.

Yesterday (Sunday) we surprised and delighted Susan. Cousins Leslie and Rudy drove up from Granby, Connecticut to visit. Susan came out on the front porch to greet them upon arrival and noticed a figure in the back seat, whom she assumed to be Leslie's father, Uncle Joe. Imagine her surprise and delight when who emerges from the back seat but Uncle Sonny, just flown up from Florida expressly to see Susan.

With Uncle Sonny there (our mother's older brother, for those who don't know) I could not not be there too, so an hour or so later Maria and I showed up, which was also a complete surprise to Susan. Thank God Susan's heart is almost as strong as her sense of design. With Cici there as well ("babysitting" Susan in Bob's absence, he and Charley then being en route back from visiting his mother in North Carolina), we had a very companionable circle of seven to enjoy the afternoon together.

I mention this because I'm pleased to be able to report that Susan looked good to me, particularly compared to the last two times I had seen her. True, she's lost 40 pounds, but that looks good off her. 41 would be too much, but down 40, she's the svelte little number Bob married back in 1980. Her energy level was decent, her voice was strong, her demeanor was perky. If you assumed she was simply partial to headscarves (or do we have a closet Muslim in the family?) and perhaps had had a bit too much sun, compromising her complexion somewhat, you would not know if you did not know.

The others needed to leave earlier, but Maria and I hung around until Bob got back around 7 last evening, having driven up from the City after the flight up from Charlotte. The poor man's been pushing. And he needs to leave early tomorrow morning for several days of business in the City. Susan's babysitter (she chose that term, not me; in my day, we used to call it a "lady's companion") is going to be Maria, who decided to preempt me in the rotation. She'll drive up tomorrow morning and spend a few days with Susan, shopping, organizing, arranging, re-organizing, shopping some more, re-arranging and generally doing the things those two love to do together, within the limits of Susan's energy. Susan will also get much better cooking out of the deal than she would have with me there.

Finally, while no firm decision has been made yet, Susan will probably return to NYC not too long after next weekend. No subways. Mask and gloves when she ventures forth. But hey, it's Manhattan.

So, all in all, a good report. Look for the next one sometime in the evening of October 26th.

Thursday, September 17, 2009

DAY +105: A Good Report: the inside scoop

Top Line: Susan gets A+ for "most improved award" but don't break out the bubbly just yet

So, the short version is: Susan's lab results and physical exam indicate she is coming along nicely. The reason not to get too excited yet is this: Susan has now moved beyond the high danger period for infections and pre/post-procedure reactions (of which, you'll remember, she had more than her share), but she is now entering the highest risk period for chronic GVHD. Mild cases are not uncommon and not serious, but GVHD has the potential to become nasty and dangerous. So we must watch and wait.

For those who want the long version, read on.

Yesterday Susan saw a dentist in Arlington (Mass.) and an oncologist in Boston. You know about Boston, but why the dentist, you might wonder? And why Arlington? Here's why . . .

Last week Susan had a terrible toothache and very pronounced swelling, as if she had an oversized wad of chewing tobacco in her cheek, which, of course, she didn't. The pain was accompanied by a number of other of the usual old complaints, in particular, nausea. Bob established and maintained contact with Dr. Soiffer, so she was being monitored. I was able to stop by Saturday for a bit and she did not look or feel good. Fortunately, time and antibiotics brought down the swelling and reduced the pain to the point where, by Monday, Susan was up to a galavanting-around-the-area-shops-and-museums run with her faithful companion Cici.

I relieved Cici Tuesday evening, pleased to discover that Susan looked and felt much better. At that point the plan was to see Soiffer Wednesday PM and then probably stay over in order to see an oncologically oriented dentist that Soiffer had lined up for Thursday. Turns out, though, that Susan's (and coincidentally, Cici's) former dentist in the City had bought a practice in Arlington (just outside of Boston) and was able to see her on short notice early Wednesday afternoon.

The problem turned out to be with tooth #30 (you all know which one that is, right?), site of a failed root canal which is non-restorable and in need of extraction. The good news is that Dr. Maniscalco felt the now contained state of the infection indicated that Susan's immune system, aided by the penicillin, was functioning at some non-negligible level -- Hooray! -- and that the extraction could wait for a couple of weeks until her next trip to Boston.

Next stop, Dana Farber Cancer Institute in Boston. Based on the blood work and X-ray Susan had upon arriving, here's what Dr. Soiffer had to say:
  • The X-ray was negative, indicating that the fluid in the base of the lungs was gone
  • the lab results were all in acceptable range, except for
  • you guessed it -- low potassium. Soiffer is not particularly concerned, but Susan needs to continue taking the horse pill-sized supplements (which she cuts in half for manageability) and it won't hurt to beef up her banana consumption
  • since her liver function is now OK - the days of VOD and ascites are gone - she can discontinue the Actigal and also the water pill; that's two pills down and 27 or so to go
  • Soiffer is also considering tapering off her immune suppression medication and may do so if the next visit's results continue to be encouraging
  • Susan does now have pretty much a full body rash, which is quite uncomfortable and for which she's been prescribed a steroid creme; the rash probably indicates a mild case of GVHD (graft vs. host disease), but that's not unusual and not a cause for concern at this point; of course, it must be watched
  • Soiffer explicitly rated Susan's progress as "A+" (of course, the grade inflation practiced by Harvard Medical School professors is notorious). When pressed, he said that it was actually a measure of improvement rather than an assessment of current condition against some absolute standard. In fact, he feels she's now at a level of progress he would expect to see in a "normal" patient (i.e., one who never experienced the complications Susan had) who was doing well. So let's make it a "B+/A-".
  • Dr. Soiffer went so far as to say that Susan could now relax the dietary restrictions, though still exercising caution. She has even been cleared to eat in restaurants, although he recommended poor restaurants with very few patrons. She still needs to avoid crowds and wear a mask when around people and it's difficult to eat with a mask on. We celebrated after the appointment by following Soiffer's recommendation -- the food court adjacent to DFCI qualifies as poor in most anybody's book and it was easy to find a back table with no people around. Susan ate a bit of less than mediocre spaghetti and meatballs for her first "restaurant" meal since May. She was underwhelmed by the experience.
Just so's you know, despite a good checkup and a satisfied doctor, and discounting a troublesome and most itchy rash and the continuing, though intermittent, nausea and the lingering fatigue, Susan isn't feeling what one might call "good." But with all the medications in her system, that's not surprising. As she is weaned off of them, a process which has now begun, we hope she will begin to feel as good as the numbers say she is.

The next DFCI visit is scheduled for Monday, October 5th. Until then . . . .

Wednesday, September 16, 2009

DAY +104: A good report card

The net: Dr. Soiffer is very satisfied with Susan's progress. 

It was a long day, so I'm going to postpone the detailed update until I get home tomorrow and can write more coherently and comprehensively. Check back Thursday, early evening.

Tuesday, September 15, 2009

DAY +103: DFCI visit postponed until 9/16

Hi, all. Long time, no blog.

This is not exactly the promised update from Susan's scheduled 9/14 DFCI visit, the reason being that Dr. Soiffer suddenly became unavailable yesterday. The visit has been moved to tomorrow, September 16th.

With Bob needing to be back in the City on Wednesday, I've been conscripted for driver duty and am planning to go up to Spencertown tonight to be at the helm for the round trip shuttle tomorrow. That means I get to put questions directly to Dr. Soiffer. The consult is scheduled for 4 PM, so any blog posting won't be until late tomorrow night or else sometime on Thurday.

Stay tuned for the real update.

Thursday, August 27, 2009

DAY +84: Moving in the Right Direction

More bananas, please. Otherwise everything's looking good.

Translation: Susan's potassium is still too low. Her other counts are all in the normal range. Dr. Soiffer does have to wait for some additional test results in order to determine which, if any, of Susan's medications can be reduced or discontinued. Potassium notwithstanding, he is satisfied with how Susan is progressing at this point.

You may remember from a post in the distant past that of all the pills Susan had to take, the one she most loathed and feared, the one that most appeared to have been designed for a horse, if not an even larger animal, was the potassium pill. It's a pill she had discontinued (I think; have to do a fact check) but may now have to resume. However, her plan as of this morning is to redouble her efforts to get her potassium the old fashioned way, but just how many bananas can one woman eat in a day? And will it be enough? We won't know until the bloodwork from her next visit to DFCI, scheduled for 9/14.

And the news from Spencertown? . . . Susan tells me she's feeling "pretty good" on some days, but not so good on others. Clearly, though, even the not so good days these days are much better than some of the days we remember from those days. It's progress. Cici had been up again for several days and she and Susan cut a wide swathe across the fun shops from Great Barrington in the East to Hudson in the West. I'm sure Cici also cooked her good dinners. By the way, Susan tells me she is eating and drinking pretty well at this point.

Barring the unexpected, expect the next post the evening of 9/14. And apologies that this post is the morning after -- wasn't able to connect with Susan until this morning.

Saturday, August 15, 2009

DAY +72: My Goodness . . . More Goodness

Top Line: Another good report at Dana Farber

The results of Susan's Dana Farber visit yesterday
  • most of her "numbers" are within normal range now
  • the few measures that are outside of range are expected to be so as a consequence of Susan's medication regimen and are no cause for concern
  • Nurse Amy has pronounced the VOD gone and the ascites that's been occasioned by it nearly so
  • her CMV test was negative which means that the team can consider taking her off the Valcyte (determination at next visit with Soiffer on 8/26); this will be good because the Valcyte is a significant contributor to her feelings of malaise
  • the fact that Susan continues to be fatigued (but she no longer needs to sleep an inordinate amount of the time) and continues to feel somewhat Y**** (but this is improving, too) is par for the course, says Nurse Amy, especially given the complications Susan had and the consequent additional medications, which she largely continues to take
  • NET: Susan's now where they'd like her to be (not Spencertown, per se, but in terms of medical condition) and is doing "very well"
As for the news around town, Cici was back up for a few days to resume her accustomed role, this time aided and abetted by a new partner, Susi Wunsch. Susan says they made good meals, which she ate reasonably well, and provided good company. They even went on outings to a housewares store in Hudson and a couple of shops in Sheffield, Mass (near Great Barrington). Just the cure for cabin fever. Cici and Susi returned to the City Thursday evening, passing the baton to Bob, who was the one to take Susan to Boston yesterday. Callie and Nate are up for the weekend, so there's company and diversion, and today looks to be a lovely day to sit poolside.

The next DFCI visit will be Wednesday, 8/26, when Dr. Soiffer will be available and, we're hoping, will determine that (a) Susan can reduce or eliminate some of her medications and (b) move to a bi-weekly schedule of checkups. That would not only represent progress on the road to recovery but also a lot less wear and tear on the Siegels.

So, unless something unforeseen happens in the interim, expect the next blog update on the evening of 8/26. Until then . . . .

Friday, August 7, 2009

DAY +65: a Good Report

Today it was Dana Farber for Susan and Bob (actually, just for Susan; Bob's only the driver). First, the vampires (a.k.a. phlebotomy unit), then Nurse Amy. Rather than list a lot of numbers with milligrams and decaliters and all that other foreign metric stuff that we Americans don't understand and shouldn't have to, suffice it to say that Susan's got great blood these days, and Nurse Amy says she's coming along nicely now. To be entirely honest, the potassium was a little bit low, but nothing that a banana or two a day can't handle.

She's lost another 6 pounds since her last visit (9 days ago) and 27 pounds overall, but I don't encourage you to try the Susan Kargman Siegel Bone Marrow Transplant Recovery Diet at home. Of course, much of that weight was retained fluid from the ascites, which is clearly much improved, but some has been lean body mass. She needs to build back up, so there'll be a focus on protein rich shakes to supplement her daily hard-boiled egg and mid-afternoon cheese hit.

By the way, the fact that she's had a good checkup doesn't mean that suddenly she feels fine. The lingering effects of her conditioning regimen and the transplant itself will continue to linger, though with diminishing intensity over time (we hope). She still has not so good days and somewhat better days, with some ability to nudge "lousy" (see, no more Y words) towards "so-so" or even better through the judicious use of drugs.

Her next scheduled checkup is in a week, and that will be my next scheduled blog post, unless something unusual happens in the interim.

Tuesday, August 4, 2009

DAY +62: Last Post until Friday, per Susan

First, how is she? "The same," to quote Susan directly. For those who may be dipping back into the blog after some time away, what does that mean? Feeling OK sometimes and kind of rotten at others ("rotten" being a synonym for the Y word in all its variants), mostly depending on where in their unpredictable courses her intermittent nausea and variable stomach pain (presumably still the ascites) happen to be. She takes medication for those conditions when she feels she needs to, and it helps.

More often than not she is eating more or less adequately and drinking enough. Her energy level is low, but she can muster enough on good days to get things done, e.g., paperwork, minor decorative and functional arranging of house and garden stuff (no heavy lifting obviously).

Second, I've provided the reminder summary above because Susan has suggested that we stop blogging every day unless there is some significant development. Her feeling is why subject us all to the daily rollercoaster of ups and downs when this variability is all within the bounds of her expected steady state, that is, it's "noise" rather than useful information. Really, how many more times do you want to have to read that Susan had a hard-boiled egg and toast for breakfast?

Accordingly, the next blog posting will be Friday evening after I learn the outcome of her Dana Farber visit, and updates thenceforth will be to report the results of her weekly DFCI visits unless something significant happens in between. You may want to check in between planned blog posts just in case something's come up, but no entry means no news which is good news.

Finally, since I won't be posting on Thursday, which happens to be Cici's birthday, please join me in wishing Cici a happy and healthy. Coincidentally, it's her 39th; that seems to be a popular age (at least for those of us old enough to remember Jack Benny, who invented the 39th birthday). Happy Birthday, Cici!!!!

Monday, August 3, 2009

DAY +61: Better Than Yesterday

Thankfully, I don't have to use the Y word tonight in any of its variants (see Tami's comment on last night's blog for Y variants), since today is a better day. Not great, but definitely better.

The big excitement was a trip to a plant store in Great Barrington. Glad she was up to that, although it did tucker her out. (Actually, I thought she wasn't allowed to do plants, but didn't think to ask Bob about it. Assume she wore a mask.)

Charley's come back up, and Bob leaves for the City tomorrow AM early. Otherwise, nothing of note. Don't you just love reports about life in Dullsville?

Sunday, August 2, 2009

DAY +60: Bob Siegel: "She's Not So Hot Today"

Today has not been a good day. No cause for alarm. Nothing is dramatically wrong or different. It's just one of those "yechy" days. She did eat some. She is drinking. She has just been feeling rotten today. It is what it is.

Otherwise, there's really no particular news or items of interest, except that S & B have begun watching the DVDs of the TV mini-series on the life of John Adams (based on the David McCullough biography). I'm pleased about this. McCullough is very good. Maybe she'll learn something and be entertained as well. After all, the purpose of literature (and by extension, TV mini-series based on literature (McCullough's biographies and histories rise to that level)) is to "delight and instruct," as both Aristotle and Horace observed. It's good to see Susan moving beyond entertainments that merely delight.

May tomorrow be a better day for her.

Saturday, August 1, 2009

DAY +59: Same-O, Same-O

The consensus amongst Susan's Recovery Blog followers seems to be: boring is good. I'm glad of that, because more boring is what we have.

On the downside we have (1) continuing intermittent stomach pain, presumably from the ascites, even though the retained fluid volume has diminished significantly, and (2) the persisting sinewave of nausea waxing and waning. Both these conditions are more or less amenable to medications, but she doesn't want to over medicate, so that's an ongoing, and delicate, balancing act.

On the upside, (1) we know that Susan's "numbers" from her tests are good (2) she's eating and drinking, not sumptuously, but enough (3) she's mostly staying awake during the usual waking hours.

If the foregoing sounds familiar, it's because we've heard this song before. We'll probably hear it again, and that probably beats the alternative. Listen in tomorrow to find out.

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.


WE INTERRUPT THIS BLOG TO BRING YOU BREAKING NEWS . . . A PHOTO, APPARENTLY GENUINE, THAT INCLUDES A RECOGNIZABLE IMAGE OF SUSAN HAS JUST SURFACED. WE ARE PUBLISHING IT HERE WHILE WE AWAIT AUTHENTICATION



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?
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.

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.

Tuesday, June 30, 2009

DAY +27: More of the Same

Nothing really to report. To quote Charley, it's "more of the same." The two times I called today Susan was sleeping. She has been eating and drinking some - not a lot but hopefully enough for this stage of her recovery. Bob's planning to be back in Boston tomorrow night, Cici will leave, Charley will stick around for a bit longer.

Again, we wait for the outcome of bloodwork and a consultation with Dr. Soiffer tomorrow afternoon. Then we'll know more, and you can read all about it tomorrow evening, same URL as usual.

Monday, June 29, 2009

DAY +26: No Bad News but No Good News

Top Line: another platelet infusion and some tests that were negative (that's good); still yechy and bone weary

Here's what I can tell you from Susan's DFCI visit today:
  • Susan's platelets, which had been up over 500 before backing down to a normal-ish 200+, were 19 today (much too low)
  • Susan had been taking Valcyte to prevent CMV infection (cytomegalovirus), which is a potentially very serious problem for immunocompromised patients
  • Valcyte's side effects can include
    -- anemia and other blood abnormalities [including reduced platelets] - check
    -- high blood pressure - check
    -- diarrhea - check
    -- nausea and vomiting - check
  • Susan was given a platelet insfusion today (which may help with the fatigue), along with saline solution, and has been taken off the valcyte
  • Susan also had an ultrasound of the abdomen, occasioned by a slight liver abnormality, and also a trace of ascites, that showed up on tests today; the results were negative, so she's likely OK there
  • Susan's blood pressure, which had been low, was too high and she's now on a new medication for that
  • Her red and white counts are decent and her weight is stable (don't ask me how, with all that she is not eating)
There's just enough going on that the hoped for Wednesday departure from Boston is now in question. Susan is scheduled for another round of tests and examination/consultation on Wednesday, and we'll have the word based on that.

Let's hope the additional platelets, and getting off the valcyte, make the difference, so that she's feeling much better tomorrow. As always, I'll let you know.

Sunday, June 28, 2009

DAY +25: a Little Bit Rocky Again

Top Line: The Guard Changes Back; for Susan, more nausea and a touch of fever

Bob's about to leave Boston for NYC; The A-Team, Cici and Charley, are en route to Boston. At least the food will be better (not that that matters to Susan right now) and the apartment will be neater.

For some reason, unclear to us, the nausea is back -- it had never fully left, but was under decent control with Atavan -- and Susan's been running a fever intermittently. Nothing astronomical, but high enough to require Tylenol. Add to that the ongoing bone-deep weariness, and she's on the wrong side of the miserable-fair border. Fortunately, she has a DFCI appointment tomorrow, and we hope that blood work and a consult with the doctor will enlighten us and reassure us. Remember, nobody said to expect a smooth, straight-line path.

On the entertainment front, I neglected to mention yesterday that Susan and Bob have been watching episodes of "Cufflinks" or "Couplings" or some such name. I'm not familiar with the series, but maybe some of your are. Bob says it lives at the intersection of Seinfeld, Sex in the City, and Friends, if that helps you. Sounds like Susan's cup of tea.

Of course, I'll let you know tomorrow what we learn from the DFCI visit.

Saturday, June 27, 2009

DAY +25: kind of the same

Nothing dramatic to report. Susan still feels yechy, or yucky (take your pick); she's sleeping a lot, eating a little, and otherwise, nothing really to report.

Looks like we'll be waiting until Monday, with her blood work and doctor's consult, to know more.

You'll know what I know when I know it.

Friday, June 26, 2009

DAY +24: Changing of the Guard Redux

Top Line: Cici and Charley are gone, Bob's back, Susan's feeling a bit yechy again.

The high standards of housekeeping and meal preparation will certainly experience some decline now that Cici is gone (Charley, too, but he doesn't cook). The loss of creature comforts notwithstanding, Susan is glad to have her man back.

There was a touch of fever last night, but Tylenol handled it nicely. Nevertheless, Susan's feeling something more of a "general malaise" that she had over the past few days. Bob will keep an eye on it and lean on the medical team if/as necessary. At this point the plan continues to be DFCI visits on Monday and Wednesday with a probable departure from Boston Thursday or Friday. Susan pointed out, somewhat ruefully, that if it hadn't been for the kidney/BK virus experience, she'd have been going home about now.

Susan, Cici, and Charley finished season one of "Mad Men," so she and Bob will need to find another diversion . . . . No, probably not that one, not at this point anyway. Remember, though, that there's a Blockbuster Video downstairs. I'm sure they'll manage something.

Maybe Bob will figure out an interesting picture to shoot, in which case I'll post it. More tomorrow, with or without a picture.

Thursday, June 25, 2009

DAY +23: Continuing on Course

More or less the same as yesterday (sans DFCI visit), down to watching "Mad Men" episodes, and falling asleep in front of the TV. Bob is expected back in Boston tomorrow afternoon, at which point Charley and Cici will return to NYC.

Don't you love short posts?

Wednesday, June 24, 2009

Day +22: a Decent Day

Top Line: Susan continues to improve and Dr. Soiffer and her medical team are satisfied with the progress

Overnight sleep - decent
Pain level - mild to non-existent
Nausea: continues to be under control, thanks to premptive Atavan strikes
Overall physical comfort level - satisfactory
Breakfast: banana and half a roll
DFCI visit
  • Susan's doctors feel she is now coming along well
  • Susan is still somewhat immuno-surpressed and was given an IVIG infusion today (intravenous immunoglobulin); the rationale was that this treatment is a "twofer" -- it would deal with the last lingering traces of the BK virus as well as beef up her immune system
  • her next DFCI visit is scheduled for next Monday,6/29
  • Monday to be followed by a Wednesday visit and, if all continues to go well, permission to leave Boston - that will be real progress
Lunch: scrambled eggs and cheese (sorry, don't know how many eggs or what kind of cheese)
Afternoon's diversion: DVD for first 3 episodes of first season of "Mad Men" (I gather it's a television series) -- Susan was engaged and enjoying it until she fell asleep during the 3rd episode
Dinner: ravioli is planned (Susan's sleeping right now, but when she wakes up)

These mundane details are not boring right now (at least not to me), given where we've been. However, I do hope (and expect) this kind of news will be very routine, and not news at all, in the near future. We're looking for a return to boring. Tune in tomorrow when I hope to have less to say.

Tuesday, June 23, 2009

DAY +21: On Track

Praise and Thanks to the Caregivers

Charles Siegel
Cynthia (aka Cici) Winant



Note the new resource listing in the right panel:
"Caregiver's Guide for Bone Marrow/Stem Cell Transplant" provided to us by Denise Lillvis of the National Bone Marrow Transplant Link, as well as a link to that organization's home page.

Charley and Cici may have broken the code -- they have given Susan a dose of Atavan pre-emptively, ahead of her scheduled time for taking her medications. This seems to reduce the nausea significantly. As a result, Susan was feeling better when last we spoke earlier this evening.

Susan had a hard boiled egg and a slice of toast for breakfast, a banana for lunch, and a little pasta for dinner. She's drinking some (not the fun stuff, though) and continues to be relatively pain free. Of course, she's still very fatigued, and it's not as if she feels good, but she's definitely feeling better than before.

Tomorrow it's Dana Farber at 7:30 AM. Oiy. Tune in tomorrow night to learn what we learn.

Monday, June 22, 2009

Day +20 evening edition: Let's Take It Slow

The good news is that there's not a lot of news. Susan continues to be relatively pain free (i.e., she doesn't feel the need for pain medications right now), but her body is still far from being at a comfortable equilibrium. This is going to take some time, even for her to get back to feeling as well (again, relatively speaking) as she did before her re-admission to the hospital. For those hoping for some direct contact, she's still not up to emailing or even talking much beyond the peremptory "could you get me a glass of juice, please."

Presumably she'll continue to gain strength now that she's back in the apartment, but remember, she is still a very recent stem cell/bone marrow transplant recipient. We'll have more information after Susan's Wednesday AM appointment at Dana Farber. It's at 7:30 AM. Good luck, Cici, in getting her up for that.

Tune in again tomorrow.


DAY +20: Coming Along

Mid-day bulletin:
  • a good night's sleep
  • continuing pain-free
  • hard-boiled egg for breakfast
  • sipping water and OJ frequently
  • Still very tired, feeling worn out from the ordeal
Sounds like the right direction, finally. More tonight.

Sunday, June 21, 2009

DAY +19 Follow-up: The Eagle Has Landed

PIX FIX
For those who may have been in withdrawal, or who just don't like to read unless there are pictures, finally we have a picture again. Charley, the film buff, tells me it's one of hundreds of bags of blood used in Quentin Tarantino's latest. Maybe. Or maybe it's the blood that's brought Susan's hematocrit back into the normal range.

Just to make it official. Susan is back in the apartment with Charley and Ceci. Seems like it's been since forever.

P.S. Her PIC Line was removed. This is both positive (in that it eliminates a potential source of infection) and encouraging (in that it indicates the medical team is not anticipating that Susan will need infusions of pain medication, antibiotics, blood, et al).

DAY +19: Goin' HOME !!!!

Top Line: Pain free for a day and half; able to eat and drink; the underlying uncovered and resolving itself; back to the apartment this evening

Again, the top line trumpets the good news, but here's a bit more detail:

Urinalysis has revealed the presence of a "BK virus" which the doctors believe is the culprit in Susan's recurring pain (and other unpleasant symptoms which I haven't been blogging about). You can google "bk virus" if you want more information, but the short story is that it can present with kidney problems (check), fever (check), narrowed ureters (check). According to one source, "BK virus was associated with cases of acute haemorrhagic cystitis following bone marrow transplantation." That also sounds like a check.

Why it's taken this long for the doctors to come up with this diagnosis, given what a lay person learns in a 5 minute internet search, is an open question (isn't there a doctor in the "House"?). However, it's good news, so we'll take it. My information is second hand, via Charley. When Bob, who is still in NYC, is able to connect with Dr. Soiffer, we'll likely learn more.

Susan did receive a blood transfusion overnight (she was up until 3 AM as they gave her PIC Line what we hope will be its final workout). She is understandably exhausted, then, but feeling "kind of OK" under the circumstances. She's in the process of being discharged and, barring the unforeseen, will not need to return to DFCI until a Wednesday AM appointment.

Callie and Nate, who were up for the weekend, returned to the City today (is Brooklyn classified as part of "the City"?), but Charley is still in Boston and Susan's friend Ceci Wynant is en route to help out and keep Susan company until Bob's return.

Saturday, June 20, 2009

DAY +18: Improving again?

Top Line: Renal ultasound was normal, pain is in check for now; Susan may be on the mend?

Things seem to be moving in the right direction, but we've said that before. Susan's medical team ordered the renal ultrasound, which was negative. That suggests that the inflammation has diminished, which is good.

Susan's numbers continue to be good, except that her hematocrit is now low enough that the team is planning on a whole blood transfusion. This is pretty usual, and not a cause for concern, and her platelets continue to be good.

Susan has been relatively pain free today and she has eaten some french toast and mashed potatoes. Aside from the transfusion of whole blood, there are no other plans at this point for interventions or treatments. Let's keep our fingers crossed.

More tomorrow early evening, or as events unfold.

Friday, June 19, 2009

DAY +17: Setback

Top Line: Susan was doing well, eating some, and then, in the late afternoon, the pain returned

The oncology stuff, anything directed related to the transplant, continues to look good. Unfortunately, the pain, which seems to go away for a while, has returned again. None of the tests they've been able to think of --CAT scans, cultures of everything, blood analysis for any kind of agent, factor, trace -- have yielded a clue to the underlying problem.

Susan is back on vicodin for the pain, and that's working so far. Hopefully, she'll have an OK night. Bob spoke with Dr. Soiffer late this afternoon and he confesses to being mystified. He's done probably a thousand or more stem cell transplants and has never seen what Susan is presenting with, so almost certainly it is not transplant related.

The team will reconvene to decide how best to proceed, but it looks now like the cytoscopy with possible stent is back on the table, as is the renal ultrasound. One thing is clear, the possibility of her returning to the apartment tomorrow is off the table. Susan has to prove that she can eat and drink sufficiently, take all her meds by mouth, and go 24 hours without any need for pain medication.

I'll update you sometime tomorrow when we know more.

Thursday, June 18, 2009

DAY +16: Moving in the Right Direction

Top Line: The numbers (blood factors) are still good, the pain has diminished, and Susan actually ate some breakfast

There's not a lot of news, which is good news. Here are the day's highlights:
  • Susan slept fairly well, if you take into account that they wake her up every hour to do this, that, and the other
  • Her temperature remains normal and her blood counts continue to be good. Blood pressure is low, but the medical team doesn't seem to be concerned about it
  • When Bob arrived this morning c. 10:30 AM, Susan was sitting up in a chair. She wasn't up to doing that yesterday or the day before
  • She ate half a serving of french toast for breakfast and so far that hasn't caused problems. When I spoke with her a short while ago, she was waiting for her pizza dinner (I doubt that she ordered the pepperoni; still, it's progress)
  • She continues on the Toradol (anti-inflammatory and pain killer) but has not needed morphine since yesterday. The doctors really didn't have much to tell her today as they still don't know much about the problem beyond its symptoms, but they are treating those effectively and feel she is making good progress
  • Bob left for NYC this afternoon and Charley left NYC for Boston. Their trains passed each other somewheres around Providence
  • If the pain continues to diminish and she experiences no flareups, and if she demonstrates that she can eat on her own and not lose her meals prematurely one way or the other, Susan will probably be released over the weekend
For those who've asked about sending flowers, DON'T. No fruit baskets either. The thought, however, is much appreciated.
More tomorrow . . . .

Wednesday, June 17, 2009

DAY +15: Some Signs of Progress but Still in the Woods

Top Line: the transplant metrics are very good and Susan's temperature is now normal, but the inexplicable pain remains

Let's start with the good news . . . . The top line tells the story but for those who want detail:
-- white cell count - 7.8 (normal range)
-- red blood cells - 3.1 (below normal range but good for transplant patient 15 days out)
-- platelets - 590 (quite high, which is good at this stage)
-- temperature - 97.8 (normal for Susan)
Also, Susan was feeling a little bit better (or rather, less bad) from mid-afternoon on. In part this is due to the morphine (Susan is single-handedly supporting the economy of Afghanistan) but also, perhaps, to the Toradol she is now receiving. Toradol is an anti-inflammatory and pain reliever. Of course, as the inflammation subsides, so should the pain. Her mucositis may be a little better, but the improvement is so subtle to this point that it's hard to be sure.

We should take comfort from the fact that Dr. Soiffer, Susan's lead transplant doctor, says he is very happy with how the transplant per se is progressing.

And as for the bad news . . . . Soiffer admits frankly to being mystified by the pain and UTI/kidney problem. The news isn't really that bad (except that Susan is suffering) in that the medical team is confident they will manage through whatever it is. Remember that all Susan's doctors are professors at Harvard Medical School, so they presumably are the bow wave of the state of the art of their respective disciplines, and they meet as a team to discuss her case every day.

The current plan is to let the Toradol and the several different antibiotics Susan is receiving continue to do their work, as there does appear to be progress (e.g., normal temperature, waning inflammation), and to provide pain medications as needed. Anything and everything that can be cultured is being cultured (except Bob, who is cultured enough already), but so far, the results have been negative. If she does not continue to improve, the medical team is considering
  • bringing in a nephrologist (kidney specialist) to supplement the urologists on the case
  • consulting with an Infectious Disease Specialist
  • administering a renal ultrasound (this non-invasive diagnostic would be in lieu of the cystoscopy, which they have decided has too much risk for the potential benefit)
That's the news to date. I'll keep you all posted as developments (or the lack thereof) warrant. Let's hope and pray that Susan has a good night.

Tuesday, June 16, 2009

DAY +14: A Tale of Two Patients

Top Line: Susan's transplant-related numbers look good, but her pain, fever, and urinary tract/kidney issues remain

As Callie indicated in her post earlier today (Thanks, Cal, for jumping in), the results of the blood work are quite good, which suggests that the transplant and Susan's body are cooperating very well up to this point. Most of the problems that have arisen appear to be coincident (i.e., not related to and not expected with a transplant), although it's fair to think that Susan's condition right now makes her an easy target for opportunistic assaults.

Yesterday was difficult, with Susan arriving at DFCI in pain for a 10 AM consult and spending the entire day being tested and evaluated before finally being re-admitted, but there's no need to recount the blow-by-blow now that it's history. As of this evening, here's the situation:
  • Thankfully, the pain subsided by this morning to a point where she has not needed morphine today
  • She continues to be on antibiotics to deal with the fever and the inflammation that now appears to be localized primarily in the right kidney.
  • The fever may be the result of the inflammation which may be the result of kidney stone(s) which may or may not have been passed. All of this "may-ness" is indeed because the doctors are uncertain. The CT scans that have been done are inconclusive.
  • What can be done (and may be done tomorrow to provide some clarity) is a cystoscopy to examine the urinary tract up to the kidney with the possible insertion of a stent to relieve pressure and facilitate passing whatever needs to be passed
  • However, the procedure and the stent risk introducing bacteria and further infection, and Dr. Doyle, her lead urologist, prefers to give the antibiotics more time to show results. If the fever and inflammation have not improved significantly by tomorrow, then the cystoscopy becomes likely
  • Susan also has oral mucositis (the "sore throat" I reported Sunday), which is a painful inflammation and ulceration in the mouth and throat. Understandably, she hasn't been able to eat, but she's getting nutrition and fluids intravenously and is able to sip enough to continue working at her full-time job -- taking a gazillion pills a day. Mucositis is commonly experienced by transplant patients, and those undergoing chemotherapy and/or radiation, so this is not unexpected. It does seem to be abating, but it's too soon to tell whether this is a slight and temporary lull or real improvement on the way to resolution.
Finally, your comments are not trees falling in the forest unheard. Susan wants everyone to know how much she appreciates all the good wishes and encouragement you've been sending her (keep 'em coming), and she apologizes that she's not yet feeling up to responding to you individually. Hopefully, the day will come soon when she's back in touch with each one of you by email and phone. REMINDER: those few of you who are posting comments as "Anonymous" and not signing them (typing your name at the end), you truly are anonymous. Unless that's your intention, time to fess up so Susan can tell you're you.

Update from Callie

My uncle doesn't have computer access right now so I just wanted to give a quick update. My mom was admitted back into the hospital last night with a high fever and severe pains in her back. (She happens to be back in the exact same room where she spent her first week at Brigham and Women's Hospital for the transplant.) They are conducting various tests to determine to cause.

The good news is that her white blood, red blood and platelet counts are now back to normal.

I will post again later tonight if there are any updates on the cause of the fever and pain...

-Callie