Susan's Recovery Chronicle

TWO YEARS + 217 DAYS: Looking Better

2012-01-15T11:40:00.001-05:00

Top Line: Susan's docs all feel she is making good progress

The most recent Dana Farber visit took place on Wednesday, January 11th. Susan saw Dr. Soiffer, her transplant case lead, as well as Drs. Marty and Dana for her MAC and eye condition respectively.

Let's keep it short and simple this time. All three felt Susan is coming along nicely. The main issue is when Susan can be weaned off of the MAC medications. Dr. Marty thinks this can happen in about 3 months. It is important because those medications have an uncertain interplay with Susan's other drug regimens (esp. the anti-rejection and GVHD meds), which themselves may now be candidates for reduction, but not until the MAC issues are removed from the equation so that her underlying, MAC-free status can be assessed.

It would certainly be nice to go from 30 to 3 pills a day. Those are made-up numbers, but you get the point: as her medication protocol can be reduced it is (1) indicative of real progress, and (2) makes daily living simpler and less difficult.

So, objectively, the measures that the doctors look at and their physical examination of Susan all indicate an improving condition, and subjectively, Susan is feeling somewhat better and less tired than she had been. Don't mistake this for normalcy yet, but we'll take it. Check back in a month for the next update.

Two Years + 165 Days: On Balance -- So So

2011-11-19T12:16:00.001-05:00

Top Line: Susan’s numbers are mostly decent, but the GVHD persists, and she’s anemic

This past Monday, Susan saw Dr. Soiffer at Dana Farber. For a change, he was the only MD on her dance card. Nice not to have had the usual hectic dashing about.

Based on the results of her lab work, Soiffer felt she was “doing good” overall. Of course, that’s his objective, numbers-driven view. Susan’s subjective, how-I-feel-driven view is less rosy (though by no means dismal), as the GVHD-inspired usual suspects (mouth, eyes, skin) continue to loiter in the vicinity. However, she’s certainly not too miserable to get out and about a bit and enjoy some of her customary pastimes (you don’t need to be told what those might be, do you?).

The one significant issue (aside from the GVHD) is that Susan is anemic, and thereon hangs a tale. Her hematocrit and hemoglobin numbers are flirting with the levels where a transfusion would be indicated. However, Dr. Soiffer believes the anemia can be ascribed in large measure to the medications she is taking for her MAC condition (mycobacterium avium complex – as you may remember from some blogs ago . . . the thing that masqueraded as tuberculosis). He’s therefore reluctant to go the transfusion route, preferring to wait and see if Susan can get off the MAC medications by, say, February (that will be Dr. Marty’s call), and if that resolves the problem.

In the meantime, the plan is to boost her blood with iron pills and diet. Chicken liver (which Susan loves in the form of chopped chicken liver, and it’s easy on her impaired eating apparatus) happens to be an especially good source of iron, and spinach is no slouch, so perhaps she can add these to the protein shakes and smoothies she’s consuming for easy-to-ingest nutrition -- think “chicken liver and spinach chocolate protein shake.” Sounds yummy.

On another front, she needs to go back to MEEI (Massuchusetts Eye and Ear Infirmary) the end of the month to provide more blood so they can make more of the special, genetically-tailored, private stock serum for her eyes. Her next regular DFCI visit is scheduled for December 19th.

Two Years + 134 Days: More Good than Bad

2011-10-18T10:20:00.000-04:00

Top Line: MAC is improving, mouth is improving (a sign of diminishing GVHD?), but Susan's blood work shows she is anemic.

The most recent visit to Dana Farber was last Wednesday (Oct 12). Dr. Soiffer was not available but Nurse Amy, who is more than qualified, pinch hit for him. Susan also saw Dr. Marty (Mr. Infectious Disease) about her MAC and Dr. Triester about her mouth. Usually, this range of MDs would require dancing around schedules and locations with separate visits to each. In this case, however, the mountains came to Mohammed, with Marty and Triester visiting Dr. Soiffer's examination area where Susan would see Amy. Very convenient and a lot less wear and tear and stress. It's nice to be a VIP. As usual, though, first stop, de rigeur, was Phlebotomy, and then . . .

Regarding lungs: Susan had had a lung scan the week previous to her DFCI visit and the coughing she had been experiencing, now greatly diminished but not gone, turns out to be asthma related. That's a prior condition, and she is responding well to the measures to control it. As for the MAC, it is much improved and Dr. Marty is pleased with her progress. There's no need to adjust the medications, or to see her again until January (barring any unforeseen development).

Regarding mouth: Clinically, Susan's mouth has definitely improved, which Dr. Triester attributes to a likely improvement in her GVHD. However, the mouth doesn't feel better, and that continues to make eating, and therefore adequate nutrition, difficult. The biopsy she had of suspicious tissue on the inside lip/gumline on her previous visit showed no malignancy (good), but rather, an uncommon condition (I can't spell the name; it must be very uncommon) that is sometimes seen with GVHD. It doesn't require treatment at this point and will likely resolve with the diminishment of the GVHD.

Triester speculates that the continuing discomfort may be due in part to this unpronounceable condition, but also to the fact that Susan hasn't had a regular dental checkup/cleaning in two years - that had been put on hold due to the GVHD-inspired state of her mouth and specialized treatments for it - but the progress is such that she is now cleared for a regular checkup and cleaning by a regular dentist. The attention of conventional dentistry may be all she needs at this point to feel as good as she tests.

Regarding recovery: With Dr. Soiffer being unavailable, it fell to Nurse Amy to interpret the morning's blood work and provide the overall assessment. Susan's weight is down, which is not surprising given how uncomfortable it is for her to eat. This substandard intake may be responsible, at least in part, for the most significant reading from the blood work: anemia. Susan's hemoglobin and red count are at levels that would normally indicate a transfusion. However, the anemia may be GVHD driven and without more information, the most appropriate treatment is unclear. Susan is to have some specialized blood tests, which can be done in NYC and the results made available to the Boston team. Once they understand the cause, they will be able to proceed accordingly.

Regarding eyes: There was no need to see Dr. Dana at Massachusetts Eye and Ear. The serum continues to work. Susan's eyes are much improved although certainly not back to normal. Eyes will be added to her dance card for her next visit, scheduled for November 14th (as is the next posting to this blog, although we seem to be running some days late, of late).

Two Years + 105 Days: A Positive Turn

2011-09-19T12:12:00.005-04:00

Top Line: Eyes improved, mouth improved (but there’s a but), skin no worse, MAC in check -- maybe GVHD is loosening its hold?

Susan and Bob made yet another pilgrimage last Wednesday to DFCI, the mecca of cancer cure, control, and care. First up (after the obligatory visit to Phlebotomy) was Dr. Villa, to address all things mouth. The good news here is that, based on comparative pictures, Susan’s mouth region looks better overall. This is important because it has been pain in this region that has made it very difficult for Susan to eat, and hence, to get adequate nutrition to promote recovery. The bad news is that there was one problem area – lesions on the gum – that needed exploring, via biopsy and stitches (big and continuing OUCH), to determine whether it is GVHD or something else. Results pending.

Next up was Dr. Soiffer, who pronounced himself satisfied with Susan’s overall condition. Her blood work results came back pretty much in acceptable range for all factors except bilirubin, which was somewhat elevated. Susan has had some swelling in the ankles, and Soiffer has put her on a water pill for this. He wants to see her again in 3 weeks.

Her final visit was with Dr. Dana at the Massachusetts Eye and Ear Infirmary for the usual battery of eye tests and an examination. Dr. Dana noticed, and Susan feels, improvement, such that he doesn’t need to see her again for 2 months, barring any unexpected developments. It seems that the tailored serum (ref. 8/15/11 post) is working – that, or her GVHD is improving, or both. You’ll know that her eyes are working because she actually drove to Hudson last week. Couldn’t have done that (at least not comfortably or safely) back when she couldn’t open her eyes.

She was not able to see Dr. Marty about her MAC condition, but here, she certainly continues to feel relief from the symptoms that led to her diagnosis. Some factors of the blood work done on Wednesday will enable Dr. Marty to determine whether the drug protocol he put her on needs any adjusting. Results there also still pending.

All in all, the improvements noted could mean that her GVHD is subsiding, but before proclaiming that a corner has been turned, let’s see what the story is after her next visit. Now, for a bit of trivia, to suggest how things might have improved: on the way back from Boston, Susan asked Bob to stop in Natick so she could check out a Container Store there – sounds like Susan of old. While in Natick, they happened upon a Jewish deli, where Susan ordered and consumed some kugel and soup (chicken, I presume), in spite of the sutures she’d received earlier in the day. That’s encouraging.

Two Years + 74 Days: Good News and Bad News

2011-08-15T11:21:00.001-04:00

Top Line: The MAC is responding well to treatment, but GVHD continues, with skin and mouth about the same and eyes worse

The Siegels were in Boston this past Monday and Tuesday (Aug 8-9) for a round of tests and appointments. On Monday Susan saw Drs. Marty and Soiffer. The good news is that Dr. Marty pronounced himself pleased with Susan’s progress against the MAC attack. As you may remember from previous posts, MAC, or mycobacterium avium complex, an infectious pulmonary disease which in Susan initially masqueraded as tuberculosis, is a serious condition that requires a year-long treatment regimen. Getting the right selection and balance of the 3 (usually) antibiotics used in treatment is challenging to begin with, and generally requires some trial and error and periodic tuning thereafter. In Susan’s case the difficulty is compounded by her post-transplant status and GVHD, with the medications required for that. However, the protocol seems to be working at this point. Susan’s incessant cough is much improved. Even so, Dr. Marty is awaiting the results of certain blood tests to determine clinically whether more adjustment is advisable.

Dr. Soiffer continues to be concerned about the intransigence of the GVHD and the level of discomfort it is causing. Turns out, the MAC medications reduce the effectiveness of the main anti-rejection medication Susan is taking for GVHD, so Dr. Soiffer significantly increased its level. There’s been no noticeable improvement yet, but it’s not even quite a week. Let’s give it time. The good news is that Susan received a decent report card on her usual set of blood tests. It wasn’t “wellness” exactly, but there was nothing alarming.

Susan was also scheduled for an endoscopy late Monday afternoon, this to explore the reasons for difficulty she has swallowing. The procedure was scrubbed at the last moment because of concern about the pain involved, due to the GVHD-inspired condition of Susan’s throat. It may be rescheduled, but only with an anesthesiologist in attendance.

The main event Tuesday was a 5 hour stint at the Massachusetts Eye and Ear Infirmary involving a battery of tests preliminary to seeing Dr. Reza Dana, Director of Cornea and Refractive Surgery. Dr. Dana is the developer of a serum that can be effective in treating conditions like Susan’s. The treatment involves harvesting growth hormones from a patient’s blood as a basis for a serum, applied as eye drops, which can repair cornea damage and promote moister eyes. Susan’s eyes were so dry that she also received tear duct plugs to help keep what moisture she is producing in circulation around the eye. After Dr. Dana, she was sent to M.E.E.I.’s pharmacist for an explanation of how to manage the serum and what to expect. It’s kind of complicated. The serum, which requires frozen storage, should be ready sometime this week, but it can be several weeks after beginning the treatment before any relief is noticeable.

Finally, Susan saw Dr. Lehrman, who was covering for the vacationing Dr. Triester. The good news here is that the yeast infection opportunistically attacking Susan’s mouth (encouraged by the plethora of antibiotics she’s taking) is now much improved. However, the GVHD symptoms persist and she is uncomfortable. Eating continues to be difficult and often painful.

All in all, poor Susan is quite miserable, although some days are better than others. In particular, and ironically, her principal complaint at this point is her eyes, despite (or because of?) the plugs inserted when she was in Boston. She often can open them only with difficulty and pain, so she can’t read or do email and can watch television (or sort of watch) only sporadically and for short stints.

Susan does want you to know that she really appreciates the emails and cards she’s been receiving (as read to her by Bob or Charley) and apologizes that she can’t at this point respond back to you.

As usual, anticipate the next blog posting after her next visit to Dana Farber, scheduled for September 14th.

TWO YEARS + 48 DAYS: about MAC

2011-07-19T19:57:00.000-04:00

Top Line: GVHD treatment on autopilot while the docs figure out the MAC attack

Susan an Bob were at Dana Farber yesterday to meet with Dr. Soiffer, her transplant doc and case manager, and with Dr. Francisco Marty, an oncological pulmonologist who is addressing the MAC (mycobacterium avium complex) issue.

The main purpose of the visit was to explain the additional medications Susan must now take and to get an early read on how her body is dealing with and responding to the new meds. At this point there are no issues, but it's early days and too soon to determine how effective this starter protocol will prove. Treating MAC, especially for a recovering transplant patient, is as much art as science, and will require continuous monitoring, primarily via blood work, with the possibility of minor to major adjustments in Susan's drug regimen. Once the right formula is in place (and it could even be this starter protocol), Susan should experience a notable improvement in her cough within 1-2 months. However, the medications will likely need to be continued for a year or more.

Susan is scheduled for a followup assessment in three weeks. At that visit she will also see an opthamologist at Mass General who will administer a serum that may help with Susan's eye problems. Yes, we said that tuning the GVHD treatments was being put on hold, but they must nonetheless be continued in a stable fashion (so as not to interfere with the interpretation and adjustment of the MAC treatments). This particular serum, however, has been determined not to have any potential conflicts with the current GVHD or MAC regimens, so it's worth trying now, given how uncomfortable Susan's eyes are.

Return to this blog in 3 weeks for an update on Susan's next DFCI visit.

TWO YEARS + 40 DAYS: add MAC to GVHD

2011-07-11T20:20:00.000-04:00

Top Line: Susan's GVHD remains unchanged but she's now developed MAC, which must be dealt with first

Susan was to have visited Dana Farber (DFCI) today. However, her appointment was moved up to last Friday. Here's why: In addition to her GVHD symptoms, Susan has had a persistent cough for several months now. Her NY internist listened to her lungs and had her get a chest X-Ray, all of which proved negative, but the cough persisted.

She was referred to a pulmonologist who ordered a CT scan, which is more sensitive than an X-Ray. This revealed that she was not being hypochondriacal, but indeed had a lung problem that looked like tuberculosis. Samples were taken for cultures and Susan was put into quarantine, pending results. House arrest and no visitors. This transpired over the 4th of July weekend, of course, which introduced delays in diagnosis and treatment. Essential personnel (Bob and Charley, because they live there), were allowed in, but distances had to be observed (the parties confined to opposite ends of the living space), masks had to be worn, and there was frequent washing of hands, if not gnashing of teeth. The initial test came back positive for TB, but it was not a definitive diagnosis, as other mycobacterial lung conditions could look the same. For certainty, we needed to await the state's TB lab test results, which took a week or so.

While this was happening in NYC, Susan and Bob were in touch with Dr. Soiffer, who doubted it could be TB and mobilized the appropriate Boston docs. He had her come up this past Friday, the day her NY State lab results were due to be available, to meet with the team he'd assembled. Bottom line: it is not TB but MAC (Mycobacterium Avium Complex), also a serious condition requiring a year-long medication regimen, but, unlike TB, it is not contagious.

The three drugs Susan will have to take are being phased in over the next week or so, and the protocol may change based on how well she can tolerate these particular meds, their potential interactions with her other meds, and how effective they prove to be. So, this is far from a walk in the park, but her case is considered to be a mild one, and in and of itself, the MAC isn't making her feel too bad, except for the near constant coughing.

Her GVHD problems persist, manifesting in the mouth, eyes, and skin, but trying new, and potentially more effective treatment for this complex of issues is on hold while her doctors establish and tune the treatment for her MAC. She will be going back up to Boston a week from today (July 18) and I'll report further then.

TWO YEARS + 5 DAYS: GVHD - THE ONGOING SAGA

2011-06-19T16:20:00.004-04:00

Top Line: the good news - no lymphoma/leukemia detected; the bad news - Graft vs. Host continues unabated. As for the details, it's complicated

On Monday, June 6th, Susan and Bob travelled to Boston for her most recent examination by Dr. Soiffer. Breaking from tradition, where this blog has provided a relatively detailed account of findings and evaluations, today (almost two weeks after the fact - apologies), you'll see only a high level summary. One reason for this is that the details are complicated and explaining them (if I understood them) would be quite laborious, both to write and to read. Another reason is that what most of you reading this blog (if any of you still are) probably want to know is simply: how is Susan doing?

Here's how: Tests reveal no trace of the cancer. Nor is there any indication that the GVHD has attacked internal organs. That's good. That said, however (and without going over every test result), her "numbers," while not at alarming levels, indicate that Susan is not doing as well statistically as she has over the past year or so. This is doubtless a reflection of the Graft vs. Host problem, which in turn may be a consequence of various medication levels having been reduced over the past half year or so. Dr. Soiffer is adjusting the meds, so let's give that a bit of time to take effect, and we'll see. Speaking of seeing, he also wants to see her in another two weeks, which is increasing the visit frequency back down to one month. At least it's better than every week. Remember those days?

And just as a reminder, and without going into the details, Susan's GVHD manifests itself in unpleasant, uncomfortable, and unsightly ways in her mouth/lips, eyes, and skin. Continuing the topical treatments for these affected areas, along with an increase in the systemically targeted medications, will (we hope) lead to improvement and significantly less discomfort. As for prognosis, nobody can say how long this problem may continue. Frustrating, but that's how it is.

Finally, and very importantly, Susan has been receiving emails and other contacts from old friends and acquaintances with whom she has lost touch over the years but who somehow became aware of her condition. Score another one for social networking media. She wants you all to know that she has been delighted and heartened by receiving word from you, so keep those cards and letters coming. However, due to her fatigue (one blood result showed anemia) and her difficulty focusing her eyes for very long on a computer screen or letter, she has been slow to respond back. She does know that you know and care, she does care that you do, and she's doing her best to get back to everybody, but be patient if she doesn't get back to you promptly.

Next communique should be in a little over two weeks.

ONE YEAR + 314 DAYS: GVHD round 4 - Improving

2011-04-13T22:19:00.003-04:00

Top Line: Susan is “doing well” overall, according to Dr. Soiffer, but it’s complicated.

Susan and Bob’s most recent Dana Farber visit was spread over two days (4/11 & 12). Monday began, as usual with a visit to the vampires, followed by an examination by Dr. Soiffer. Here are the salient points:

clinically Susan is doing well even though she isn’t feeling all that well.
Blood work results were good; slight elevation in white count but nothing alarming.
Ascites has definitely diminished.
With respect to the GVHD symptoms, mouth looks better, eyes about the same, skin continues to be very rashy, but since it’s not too itchy, leave it alone rather than add additional steroidal medications.
Positive adjustments in medications: prednisone reduced by 33%, pills for ascites reduced from 3 to 2.
Soiffer recommends, but does not insist upon, trying flaxseed oil for the eyes; Susan is considering.
At next visit, which will be around the 2 year anniversary, Susan will have a flow cytometry performed. This is a technique for counting and examining microscopic particles (e.g., cells, chromosomes) in the blood and should reveal the status of the “markers” that define Susan’s disease. In other words, it should provide a quantifiable report card on Susan’s condition; however, if the results are not definitive, it may be necessary for Susan to undergo a bone marrow biopsy, which, to understate the case, is not pleasant.

Next, Susan was seen by Dr. Jacobs, her oncological opthamologist.

Clinically, her eyes seemed about the same as last visit two months ago, although Susan feels they hurt a bit more. Dr. Jacobs did comment that Susan’s case was far from the worst she has seen and that the chronic GVHD which Susan is currently experiencing at a relatively mild and non-worsening level (as manifested in eyes, mouth, and skin) is actually an encouraging sign.
Some background: the discomfort is due in large measure to dry eyes, to combat which opthamologists often insert plugs to block the tear ducts, thus keeping the eyes moist. There are four tear ducts altogether – upper and lower for each eye.
Dr. Seedor, a NYC opthamologist working with Dr. Jacobs, inserted one plug (of a possible four) about two weeks ago as a “proof of concept.”
When Dr. Jacobs examined Susan, she determined that the plug had come out (as can sometimes happen).
Dr. Jacobs decided to insert 3-day dissolving plugs in all four tear ducts to judge whether this treatment was providing relief, and how much (to be determined by how Susan feels with the plugs vs. after the plugs have dissolved in three days). If the plugs turn out to be effective, then Jacobs and Seedor will confer about Seedor putting in four permanent plugs.
Dr. Jacobs also gave Susan a sample of Lotemax, a prescription medication for dry eyes. Susan’s eyes are feeling better today, but it’s impossible to determine how much of the improvement is due to the Lotemax vs. the temporary plugs. After the plugs dissolve (which should be in another day or two) it will be possible to evaluate the effect of the Lotemax, as well as to determine whether to go ahead with permanent tear duct plugs.

On Tuesday Susan saw Dr. Treister for her mouth:

Dr. Treister definitely felt that the condition of Susan’s mouth had improved since the last visit two months ago.
He is having her continue with the mouth rinse she started as part of the clinical trial (see blog entries for 11/30/10 and 1/19/11), but at a reduced frequency, which is good news.
However, there is no apparent improvement in the condition of the lips. Susan has found that OTC lip balms provide as much topical relief as does the medication Dr. Treister prescribed. He is switching her to a new, steroid-based medication which she is to use 2X/day while she may continue to employ OTC balms as desired.

The net: Susan’s “vital signs” with respect to the disease are good and her GVHD, which is at worst a moderate case, is stable to improving. We’ll take it. The next DFCI visit is scheduled for June 6th, just after the two year anniversary of the transplant procedure. You‘ll be able to read all about it here in the blog shortly thereafter.

ONE YEAR + 260 DAYS: GVHD round three

2011-02-16T15:54:00.007-05:00

We interrupt this blog to bring you a just-breaking request from its subject, Susan.

In addition to friends and family with whom she is otherwise in touch, Susan has, with surprise and pleasure, gratefully received comments posted to the blog from people lost in her past and even a few total strangers. She would like to acknowledge this support but the blog does not require or capture your contact information. If and when you post comments, please feel free to include a contact email address or to reach out to Susan directly at SusanKargman@gmail.com. Thank you.

We now return to our irregularly scheduled blog posting.

Top Line: chronic GVHD persists (which is why they call it "chronic") as manifested in eyes, mouth, and skin, but it's not worsening.

While Monday offered Valentine's Day pleasures for most of us, for Susan and Bob it was another Boston grind: Dr. Soiffer, of course (preceded by the de rigeur pitstop at Phlebotomy so Soiffer would have numbers to cluck over). Also Dr. Triester for her mouth and Dr. Jacobs for her eyes. Lots of running around. At least the day was spiced up by the fact that the oncology people are now in their spanking new state-of-the-art digs, so there was the novelty of unfamiliar, and jazzy, surroundings. By the way, keep in mind that Boston's not all of it -- she regularly sees an internist and dermatologist in NYC whose observations and treatments need to be melded with those of the Boston docs.

Add it all up, and here's what's going on, in Susan's own words:
"Count: 22 pills (although one went down in dosage this visit) PLUS various drops, creams gels for mouth and eyes. Fun regimen."

But let's keep the long view in mind. Progress is being made, as a 9/11/10 photo of this glamorous woman suggests

Now, for the rundown of Monday's visit . . .

1. the SOIFFER segment: Susan's blood work was good, which is good, so they talked about the fact that chronic GVHD, even this far out, is not that unusual. It's impossible to predict how long it will last, but it could be many months, or it could be less (it's been, what?, three or four so far). It can't be "cured." It will run whatever its course turns out to be. However, it can be managed symptomatically (hence the doctors for eyes, mouth, and skin), with several of the indicated treatments being steroid based.

That introduces it's own set of problems, as steroids are not benign medications. It's a fine balancing act to provide enough steroid-based treatments, coordinated across several battlefronts (eyes, mouth, skin) to promote comfort and healing while limiting the complications which steroids entail. In fact, each specialist Susan is seeing would like to give her even more steroids but they can't, because in the aggregate she's at the fine edge between more harm than good. One of the side effects of these steroids is difficulty sleeping. File that thought.

The new news is that (1) Susan has an upper respiratory infection, which her internist is treating with antibiotics, but she feels kind of rotten as a result. And (2) Susan has not been sleeping. She either can't sleep so she stays up until 3, 4, or 5 in the morning, or she does manage to fall asleep earlier, say 11 PM or midnight, but then wakes up at 2 and can't get back to sleep. That makes her feel kind of rotten, too. Add in the GVHD, and you get the picture. Of course, adequate sleep is important to her recovery from GVHD. Dr. Soiffer prescribed a new sleep medication. We'll see how effective it is.

2. the TRIESTER segment: The condition of Susan's mouth is about the same to slightly improved, but Dr. Triester observed what might be a yeast infection so he has added an anti-fungal medication to the rinses and creams she is already using for her mouth and lips.

3. the JACOBS segment: there appears to be some modest improvement in Susan's eyes.

On the dermatological front, while she is still rashy, she is not itching as much as she once was. So, she may be a little less uncomfortable with respect to GVHD symptoms, but we don't know, because the upper respiratory infection and sleep deprivation are masking how she would otherwise feel. As the antibiotics and the new sleeping pills do their job, We think and hope that, with respect to GVHD, she'll feel somewhat better.

Dr. Soiffer's scheduled her next visit for April 11th, almost two months out. I take that as a good sign. Tune in then for the next update,

2011-01-19T22:49:00.000-05:00

ONE YEAR + 232 DAYS: GVHD round two, continued

2011-01-19T16:59:00.002-05:00

Top Line: Susan’s been experiencing some GVHD for a few months now, but it’s gradually improving.

Susan and Bob did the Boston thing two weeks ago (Jan 5), preceded by a dermatology visit in NYC on Jan 4 as part of the same cluster of care. (Apologies for this belated report.)

Here’s the skinny:
Susan is continuing to experience a return of Graft vs. Host, as described in the November 30 post. You may remember that this is a common occurrence in transplant patients. In its severe form, which tends to happen earlier in the transplant experience, it can be very dangerous. When it occurs this long after the procedure it is less likely to be life threatening, but it can be quite uncomfortable. However, it is also an indication that the transplant is working, which is good.

Without being specific, because the details get icky, Susan’s GVH is manifesting in her mouth and eyes as well as in pretty extensive rashing, particularly around the torso. Rest assured, Susan’s condition is being followed assiduously by her doctors, Dr. Latkowski for her skin, Dr. Jacobs for her eyes, Dr. Triester for her mouth, and, of course, her primary transplant oncologist, Dr. Soiffer. The good news is that the various symptoms seem to have peaked and are finally starting to abate. The study being conducted by Dr. Triester, the one where Susan was given one of two medications currently under review, has concluded and she is now being given both medications, along with topical salves for her lips. Otherwise, it’s various steroidal products along with a number of lotions and ointments for eyes and body rash.

As those of you who are in closer touch with Susan will know, the GVHD has slowed her down, as she oscillates between uncomfortable and very uncomfortable, but it has not stopped her. She’s not always up to it, but she does get out some to do the usual things she likes to do (i.e., shop), although she does need to be very careful with what she eats – Bob’s been enlisted as her taster – as anything at all spicy and even certain unspecified ingredients that you or I might not notice can cause real distress. But she’s coping . . . and, I think, gradually improving.

I promise to blog more promptly after her next DFCI visit.

ONE YEAR + 182 DAYS: Let Us Not Be Rash

2010-11-30T19:05:00.008-05:00

Top Line: a Touch of GVH, manifesting as rash, but not serious

It wasn't bound to happen, but it's not surprising that it has. And don't worry. We've got your back. Also your eyes, mouth, and front. That's the official assessment from the good Dr. Soiffer, per Susan's visit to DFCI yesterday. In short, she has developed a mild to moderate case of GVH (graft vs. host), which has manifested as a body rash, mouth sores, and inflamed and glassy eyes . In case you don't remember what GVHD is, you can scroll down to the bottom of the blog where you'll find a description of the disease, the transplant procedure, and the risk factors in doing the transplant.

The condition isn't fun, but it isn't debilitating. Maria and I visited with Susan and Bob this past Saturday in Spencertown, and she was up to hosting a small family gathering (Leslie, Rudy, and John Henri Richardson, Nate and Callie, Charley Siegel, and us). With her body covered, as it was, you wouldn't have known.

That said, the condition has to be treated and watched. So, here's the summary from the DFCI visit: blood work results were basically good, except for a slight elevation in the liver numbers. Dr. Soiffer had Susan see an oral oncologist on staff, who prescribed a lip cream and is deciding between one of two different mouth rinses that are currently being evaluated in a clinical study. Susan will need to be enrolled in the study in order to receive the treatment, and that registration (which may require another trip to Boston next week) is currently in process. The good news about this study is that it does not compare the treatment to a placebo but rather pits the two medications against each other, head to head. So, Susan will be getting something, whatever it is, that is expected to work.

For her eyes, Susan still needs to see an oncological opthamologist (which will happen at DFCI if she returns next week, otherwise in NYC), and for her body rash, her own dermatologist (who did an oncology rotation at DFCI). So, there are still open issues, but a plan is in place to address them. In the meantime, please realize that while her condition needs to be treated and followed, it is not considered life threatening. She is uncomfortable but not miserable. It is not the "yechy-ness" of old.

Susan will need to return to DFCI in about a month as part of the study to assess the efficacy of whichever mouth rinse is prescribed for her. Hopefully by then the rash, and the GVH, will have subsided, if not disappeared entirely. You can read about it here when it happens.

ONE YEAR + 125 DAYS: Looking Good

2010-10-05T12:53:00.009-04:00

Top Line: Progressing Nicely

Susan, accompanied by her ever faithful chauffeur and spouse, Bob, was in Boston yesterday to see Dr. Rob Soiffer, her ever faithful oncological transplant specialist. The tests run indicated no issues worth mentioning, Susan's outward appearance and her self-assessed condition were good, and Dr. S. pronounced himself satisfied. He swapped out one medication for a milder variant and indicated that he planned, over time, to wean Susan off most of the drugs she currently takes. A good marker for her progress is that Dr. Soiffer scheduled her next appointment for two months out. Remember back when it was every week?

As for this blog, is anyone still out there? At this point, the blog's audience, if any remnant of it remains, realizes that Susan has been doing well these last several months. Accordingly, blog entries are becoming briefer and more widely spaced. Soon they may become so brief and so widely spaced in time that they will, for all practical purposes, cease to exist, and that will be a good thing. Nevertheless, Susan's ever faithful blogster will remain at his post blogging until there is absolutely nothing left to blog because Susan has been pronounced officially "cured." And if these posts have already become, or will so become soon, something akin to the problematic sound or lack thereof of the proverbial tree falling in the forest with no one to hear (or, in this case, see), so be it. . . .

. . . all of which is to say, in typically long-winded fashion: "back in two months with the next update, whether you tune in to read it or not."

ONE YEAR + 55 DAYS: Coming Along

2010-07-27T20:42:00.002-04:00

Short and Sweet: Susan had a good visit with Dr. Soiffer yesterday. There are a few test results that were not available on a same day basis, but what lab work did come back was decent. From a quantitative perspective, Susan is doing well at this point, and those of you who have seen or talked to her recently know that in general she's been feeling pretty good.

As you may remember, the further out from the transplant Susan gets, the less likely it is that she will have complications or setbacks. So what's happening (or not happening) now is goodness. However, while increasingly less likely, problems can still arise, so the appropriate position is "guardedly optimistic."

DAY +365: Happy Anniversary!

2010-06-02T19:43:00.002-04:00

Top Line: a good report at the 1 year mark

Hard to believe, but it was a year ago today that Susan received her transplant. For those fond of strolling down Memory Lane, I have dug into the archives to append the blog from that day (see below). As for today, here's how things stand:

Susan was to have gone to Boston yesterday for a liver biopsy, among other things, but she "called in sick" with a sore throat, so those procedures were postponed. By last night she was feeling better and today Susan and Bob drove up for her scheduled appointment with Dr. Soiffer. Her consultation came after the usual round of vital-signs-taking and blood tests, all the results of which are not yet available, but based upon what Soiffer did see, he pronounced her "doing very well at this point," especially given her rocky history over the past year.

To be more specific: those test results that were available by this afternoon were all good, including those that indicate how the liver is doing (e.g., bilirubin). The liver, as a potential locus for GVHD, has been, you'll remember, an ongoing concern, with a secondary manifestation of severe ascites. One of the rationales for the liver biopsy scheduled for yesterday was continuing ascites. I'm delighted to report that the ascites is now so diminished that Soiffer doesn't see a need for the liver biopsy.

The most interesting aspect of the day was the spate of re-vaccinations which Susan needed to have administered. A year ago, when she lost her marrow, she lost her vaccine-provided immunities. Today, like an infant, she was at the point where she was ready for her standard set of childhood vaccinations. Happy Anniversary and Happy Birthday, Susan!

As those of you who have had recent contact with Susan outside of this blog will know, after what seemed an interminable period of halting and uncertain progress, with two fair-to-good days followed by a really Y**** day, Susan has strung together an impressive number of good days. While she appears painfully thin, or fashionably slender, she has actually gained back 4 pounds recently and is now eating with a pretty good appetite. Woohoo! It's a far cry from cheering when she managed to down half of a grilled cheese sandwich.

The one year mark is often thought of as a watershed (informally, of course, as there's no clinical, or magical, boundary that separates day 364 from 366). But transplant patients who make it this far are seen as moving into clearer, less dangerous waters. No guarantees (when ever are there) but the progress is indisputable.

We'll wait, of course, for the remaining test results, but absent surprises, Susan's free to cruise along unmonitored until her next DFCI visit on July 9th. Until then . . .

Tuesday, June 2, 2009

DAY ZERO: Out with the Bad Cells, In with the Good

The donor stem cell's, now Susan's (top)
Susan and Nurse Karen doing nothing (left)

The deed is done. The infusion began at approximately 10:15 today and was finished about an hour and a half later - turned out to be briefer than expected. And yes, for the major inflection point in Susan's disease, it was an underwhelming event. Nurse Karen simply hooked up the bag with the stem cells (the red bag in the picture above) and that was it. No drumrolls, no fireworks display, just a steady drip like any other coming from a bag through an IV line. If Susan did not know it was happening, she wouldn't have been able to tell.

Susan's team of 5 doctors came in at one point during the procedure, nodded sagely, clucked a bit, squabbled mildly and made up (just to show they were on the job), and then left without doing anything or offering any useful information or advice. Dr. Soifer (Susan's lead transplant specialist) stopped in a bit later to say hello and said everything was looking good.

Susan has no appetite but Nurse Karen says that's par for the course. I'll continue to nag her about her applesauce and fluids. Otherwise, she definitely looks better than she did yesterday and feels somewhat better - if she were eating and drinking, she'd feel better still, but that's a fine balancing act between nutrition and nausea.

Susan's room is a little like Grand Central - people are constantly popping in and out. In just the past hour we've had Nurse Karen bearing ice chips, Carol the Patient Care Coordinator with documents to sign, and Tammy the Social Worker for no discernible reason, but she was very sweet and she did leave her card.

And finally, Susan says "Hi. I'm glad it's over, but the real part is just starting." Couldn't coax more of a statement from her for the record at this point, but she says she may have more to say later, so stay tuned.

DAY +314: Still Working to Understand the Issue

2010-04-14T16:42:00.003-04:00

Top Line: Internal bleeding (now resolved) has delayed plan

Susan and Bob went up to Dana Farber Monday, where they expected to meet with the gastroenterologist to get to the bottom of the ascites/liver issue. Susan was looking and feeling a bit peaked, though, and the blood work (which is always done first upon arrival) revealed a significantly depressed hematocrit, a sign of internal bleeding. Dealing with this put all other plans on hold.

An endoscopy was performed and it revealed bleeding ulcers, both esophogeal and gastric. Susan was hospitalized, put on Nexium intravenously, and given 4 units of blood. Today she was feeling much better -- nothing like a jolt of fresh blood to perk a body up -- and actually ate a good breakfast.

This afternoon they performed a needle biopsy to get a sample of the ascites fluid. The doctors are going to consider the results of the various samples they have taken and bring that information into an examination and consult on April 26th with the gastroenterologist being tasked to get to the bottom of Susan's condition. Paracentesis to drain the ascites fluid is also a likely treatment item when she returns on the 26th. As I write, she should be in the process of being released to return home to NYC, but with a number of adjusted and new medications.

Tune back in late on April 26th, when I expect to be blogging the results of Susan's next DFCI visit.

DAY +306: Working to Understand the Issue

2010-04-06T07:38:00.003-04:00

Top Line: No alarming outcomes but the persistant ascites an issue

The good news is that there was no bad news resulting from Susan's visit to Dr. Soiffer on Monday. However, she continues to be something of a medical mystery. Ascites, the buildup and retention of fluid in the abdomen, is usually a byproduct of some kind of liver issue. Susan's ascites continues and seems to be associated with her maddening pattern of two or three good days followed by a bad day (remember "yech"?). So, what's the liver issue? What's going on gastrointestinally speaking? What's root cause? Nobody knows.

As Soiffer explained it, all the various tests she's had over the past several months -- endoscopy, MRI, liver ultrasound, et al. and ad infinitum -- seem to point in different, mutually exclusive directions. It's a puzzlement. He has enlisted his most preferred gastroenterologist, someone who was desired but not available in an earlier go-round on this matter, and this guy, we hope, will be able to figure it out. He has ordered an echocardiogram, to be done this week in NYC, and then a return visit to DFCI next Monday when Susan will undergo another paracentesis to remove excess fluid that's accumulated due to the ascites. Based on outcomes, combined with all previous data points, he will, we hope, have a better understanding of Susan's condition than has been hitherto achieved and will prescribe the appropriate course of action.

Meanwhile, let's keep this all in perspective. It's now more than 300 days since the procedure. The further out she gets, the better the prognosis for a lasting cure. While there's been some GVHD, which is the greatest threat to a transplant patient, it has not been particularly virulent. Over time, if the conflict hasn't escalated, the foreign and native armies just get worn out from fighting and decide to get along, intermingle, intermarry, until, ultimately, they can't tell themselves apart from each other.

Susan is experiencing more good days, days where she feels almost like a civilian, than bad. She's getting things done, getting out of the house (except on bad days). Let's see what this new doctor comes up with. I'll report back, via this blog, after her visit to him next week.

DAY +278: inconclusive results

2010-03-09T09:35:00.002-05:00

Top Line: Susan's not doing too badly, but the docs aren't sure what's going on

Yesterday Susan was up in Boston for an endoscopy and a consult with Dr. Soiffer, the oncologist who's overseeing her transplant and recovery.

The endoscopy revealed no signs of GVHD (graft vs. host disease) in her stomach or above; however, it did show something going on which they are uncertain about at this point.

The liver biopsy which Susan had a bit ago indicates GVHD affecting the liver, but it isn't a severe, debilitating case. The treatment for this, upon which she is about to embark, is low dosage steriods.

Susan continues with her pattern of a couple of good days followed by a bad day. Why she should experience this fairly regular cycle no one knows. Perhaps it's the GVHD, in which case the steroids may resolve the matter, or perhaps it's due to whatever it is that was noticed in the endoscopy, or perhaps it's something else entirely. Let's hope some clarity emerges at her next Soiffer visit, which will be in about a month.

DAY +245: Waiting for Results

2010-02-04T11:30:00.003-05:00

Top Line: Blood chemistry OK, liver biopsy results in 7-10 days

Susan, ferried by the indefatigable Bob, spent a couple of days in Boston this week. On Monday she had her usual round of blood work and saw Dr. Soiffer. For the most part, her numbers were good, although a couple of areas were suspect and bear watching. No need for details unless and until there's something specifically and clearly amiss.

Tuesday was the liver biopsy, accomplished under local anesthetic (and a tranquilizer). The process was an all day affair, start to finish, given necessary post-procedure observation time to be sure there was no bleeding. It went smoothly, proving to be more tedious and annoying than painful, but we'll need to wait 7-10 days for results. It was well into the evening before the Siegels left Boston. After two long and stress-filled days, Susan is, understandably, not at the top of her game. A few days rest and recuperation should see her feeling reasonably decent again.

I'll post again when there's some definitive news from the biopsy, and after that, to provide the outcomes from her next Dana Farber checkup, scheduled for March 8th.

DAY +217: Ascites Resolved; Liver Resolution in Process

2010-01-07T12:51:00.002-05:00

Top Line: abdominal fluid buildup drained; more info/time needed to resolve liver issues

Yesterday Susan had about a gallon of fluid, over 9 pounds, removed from her abdominal area (it was nearly 4 liters, in medical speak, but we're Americans, so we don't do metric). It's a quick way to lose weight but don't try it at home. This has alleviated the extreme discomfort of the ascites, although it has introduced a new, but temporary discomfort of its own as the various organs and innards resettle into their reconfigured space. That will pass, presumably leaving Susan feeling much more comfortable than she has for a while now.

The MRI revealed a partial thrombosis (i.e., clot) in the portal vein into the liver, as well as scarring on the liver. The doctors don't know at this point what caused the scarring. More information needs to be gathered, which will be done via

a liver biopsy,
an analysis of the withdrawn ascites fluid,
and a "chem 20" blood test (a comprehensive metabolic panel of 20 chemical tests performed on serum (the portion of blood without cells).

The usual treatment for the partial thrombosis can either be blood thinners or simply the passage of time to let the body deal with the matter on its own. Susan's team has decided to hold off (by default, adopting the "time" approach for now), pending the information still to be gathered

Susan's overall blood results from Monday were in or close to normal range, including bilirubin for liver function, so there's no medical emergency involved. The ascites fluid analysis is already in the works. Susan will probably have the chem 20 done at NYU and possibly the liver biopsy as well, but her Boston team is OK with her waiting on these until her next DFCI visit in early February (don't know the exact date yet). By the way, the skin problems reported on previously in this blog are also most likely attributable to the liver problem, rather than GVHD as once speculated, so we'll hope for improvement on that score as well once the liver issue has been successfully addressed.

When I get a firm date for the next DFCI visit and/or other significant information, I'll post it, but as I can't anticipate when that will be, you might want to check on the blog periodically. Of course, the next full report will be after the February visit.

DAY +215: Light at the End of the Tunnel?

2010-01-05T20:58:00.003-05:00

Top Line: Blood Tests results were decent; no current evidence of GVHD; liver issue being worked through

Today Susan met with Dr. Cohen, a "really fabulous" hepatologist according to Bob. The results of the late afternoon MRI were not available but, pending those, Dr. Cohen said the problem is likely either a clot in the portal vein or VOD (remember veno occlusive disease?). Whatever the cause of the liver problem, the liver issue is the cause of the ascites. However, he thinks that her test results overall are pretty good.

So, pending the determination of root cause and corresponding treatment, Dr. Cohen wants to eliminate the ascites, which will be done simply by withdrawing all the fluid via a syringe. It could take a while (remember how many pounds of excess fluid Susan carried the last time ascites was an issue), but the procedure is straightforward and not a cause for concern. It is scheduled for 11:00 AM tomorrow, so it's another night in Boston. Once the underlying liver issue is dealt with, the ascites should not return.

I'll blog again tomorrow with what I expect will be the final update for the current DFCI visit.

DAY +214: Inconclusive - MRI Tomorrow

2010-01-04T20:31:00.003-05:00

Top Line: A short but not as sweet an entry as we'd like:

Susan and Bob were at Dana Farber today as scheduled. Her liver took front an center. As you may remember, the last blog entry indicated that some level of ascites had returned, and you may also remember that the ascites is a result of liver issues.

The ascites has worsened over the past month so Dr. Soiffer had an ultrasound done. The results were inconclusive and he therefore wants Susan to see a liver specialist and have an MRI, which is scheduled for late tomorrow afternoon (the first available slot). The Siegels are staying in Boston tonight and we should know more by tomorrow evening. I'll blog again as soon as I have news.

DAY +189: Good News

2009-12-10T17:24:00.004-05:00

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.

Day +181: a Good Report

2009-12-02T18:10:00.005-05:00

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.

DAY +159: Better here, Worse there = ?

2009-11-10T21:13:00.002-05:00

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.

DAY +145: a Bit of Chop in the Water

2009-10-27T20:57:00.002-04:00

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.

"No News is" . . . No News

2009-10-26T21:42:00.002-04:00

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.

DAY +123: Good Blood, Bad Tooth

2009-10-05T21:35:00.007-04:00

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.

DAY +105: A Good Report: the inside scoop

2009-09-17T14:05:00.011-04:00

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 . . . .

DAY +104: A good report card

2009-09-16T21:13:00.002-04:00

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.

DAY +103: DFCI visit postponed until 9/16

2009-09-15T10:06:00.004-04:00

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.

DAY +84: Moving in the Right Direction

2009-08-27T10:23:00.002-04:00

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.

DAY +72: My Goodness . . . More Goodness

2009-08-15T10:01:00.004-04:00

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 . . . .

DAY +65: a Good Report

2009-08-07T22:55:00.006-04:00

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.

DAY +62: Last Post until Friday, per Susan

2009-08-04T20:50:00.006-04:00

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!!!!

DAY +61: Better Than Yesterday

2009-08-03T19:59:00.005-04:00

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?

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

2009-08-02T20:45:00.004-04:00

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.

DAY +59: Same-O, Same-O

2009-08-01T19:13:00.002-04:00

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.

DAY +58: Steady as She Goes

2009-07-31T22:20:00.002-04:00

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.

DAY +57: Home Alone

2009-07-30T19:28:00.007-04:00

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.

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

2009-07-29T19:34:00.005-04:00

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.

DAY +55: a Better Day

2009-07-28T19:58:00.002-04:00

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?)

DAY +54: Like Yesterday, then Better

2009-07-27T21:28:00.004-04:00

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.

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

2009-07-26T21:21:00.023-04:00

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.

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

2009-07-25T19:45:00.003-04:00

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.

DAY +51: a Decent Report Card from DFCI

2009-07-24T21:14:00.003-04:00

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.

DAY +50: Steady as She Goes

2009-07-23T18:37:00.005-04:00

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

Today's news is not materially different than yesterday's, so there's really no need to read further, unless you want the specifics of the day, which are as follows (per Cici):

the activities of the day included organizing stuff, with Susan actually working some alongside Cici; I don't know what the "stuff" was or how it was organized, but Susan has long had a compulsion for this kind of activity, so I assume it gives her satisfaction (does she actively enjoy the process, or would it simply cause her distress not to organize stuff? I don't know, and I've been her brother since 1948), and it's a good thing that she's up to the task now
Susan also met with the architects (two of them); at least they claimed to be the architects -- they were masked, as visitors must be; don't know what occasioned the consultation but, again, it's good that Susan is up to being involved in this kind of activity
Regarding today's menu:
-- breakfast: toast and banana
-- lunch: egg salad sandwich
-- potassium fix: today they tried mixing it into applesauce -- at least that avoids the sacrilege of spoiling a perfectly good Ring Ding or Twinkie -- but they're still experimenting with the least objectionable way of getting the potassium down
-- dinner: leftover hamburger & Velveeta casserole is planned; Susan says it was good
Cici says Susan is drinking well and often, going to the "loo" a lot (Cici's term); that's good news; hopefully, tomorrow's DFCI visit will produce some metrics to indicate that the ascites is receding
Susan has been coughing some and a chest X-ray is planned for tomorrow, along with the ultrasound, but the cough is not at a distressing level and the X-ray is just precautionary
They finished season 2 of Mad Men last night and will probably just watch regular old television tonight

So much for Cici's report. I also got to talk with Susan and asked her what words she had for all of us out in her blogosphere. It was simply, "tell them 'hello'." She does admit to moving around a little bit better and spending a lot more time up and around. She also allowed that the ascites pain, nausea, and a few other complaints seem to be less severe in frequency and intensity but it was a totally random matter as to when any particular problem would strike. Tomorrow is their visit to Boston for tests and a consult at Dana Farber. We'll know soon enough what that tells us.

DAY +49: Cici, Bonjour; Charley, Adieu

2009-07-22T18:30:00.004-04:00

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

Here's what Cici has to say about her friend Susan:

first impression: she looks "really really well" compared to the last time Cici saw her (of course, that was when Susan was sleeping 20 hours/day)
her coloring is good and she looks a wee bit less bloated (ascites improving?)
Susan herself admitted to "maybe . . . feeling a little better"
The two of them sat outside for a good bit and Susan had Cici weeding in the garden, throwing stuff out in the dumpster, and moving things around [editor's note: probably the same things she had Charley move the day before]
Susan also spent a fair amount of time talking with Tom, their key construction/handyman guy, and Diane, their landscape architect, so she's clearly engaged with what's going on with the property
breakfast was a waffle; lunch, a PB&J sandwich; then a late afternoon snack of a hostess cupcake laced with a broken up potassium horse pill; for dinner Cici is planning on a hamburger casserole with Velveeta (her mother's recipe -- sounds like an ultimate comfort food) . . . I must note, the Siegel men don't cook like that; thank God for microwaves
Tonight they're planning on a Mad Men episode

This is all sounding good, but do bear in mind that part of what makes Cici such a delightful person is her cheery, optimistic view of the world, so some discounting of her impressions is probably prudent. Nonetheless, it's a positive picture, certainly for today. As always, let's see what tomorrow brings.

DAY +48: Mother and Son

2009-07-21T18:44:00.004-04:00

It's getting to be like Buckingham Palace . . . yet another Changing of the Guard: Bob's gone back to the City to "take care of business," but Charley's come up to the country to be his mother's companion, chef, and general helpmate. Susan was busy watching television (more about why below) when I called and I didn't want to disturb her, so here's the report from Charley:

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

As usual, we are all interested, I am sure, to see what tomorrow brings

DAY +47: to Boston and Back

2009-07-20T21:06:00.002-04:00

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

Here's what I know about Susan's current condition and what happened at Susan's DFCI visit today:

white and red blood counts OK
platelets low now, but it appears to be related to a specific medication and is not a cause for concern (or infusion) at this point
VOD status is indeterminate: the bilirubin levels are about the same and it's not possible to say whether the VOD is in the process of resolving or it might get worse; Soiffer seems to think it's more likely that the condition will resolve itself slowly over time
Susan continues to be very uncomfortable with her ascites, and at times it is downright painful, but it is not considered serious enough to justify the risks of paracentesis (i.e., a needle and tube to drain the fluid), given Susan's compromised immune system; again, as the VOD improves, so should the ascites
Susan actually lost 8 lbs. since her last weigh-in (but I don't know when that was); how much of this loss is due to vanished lean body mass and how much to disappearing ascites fluid we can't say
to net out Dr. Soiffer's position: he is not dissatisfied with Susan's condition right now (given the setbacks that she's had), but he isn't thrilled by her progress, either; he is expecting that improvement will continue, but slowly
Susan informs me (first time I've been able to speak to her directly in days) that the nausea is still an issue, episodically
She is, however, spending her days mostly awake now, which is a welcome reversal

Susan will return to Boston for another checkup this Friday. It will include an ultrasound (kidneys, and I think liver) as well as the usual blood workup and consult with Dr. Soiffer. On the domestic front, for those who are curious about Bob's culinary feats, last night it turned out to be frozen pizza (remember, she isn't allowed to have the fresh stuff from a pizzeria, or any restaurant food for that matter). They have one more episode to go to finish the second season of Mad Men. If they're not too tired when they get back to Spencertown (they didn't leave Boston until 6 PM), they'll polish it off tonight. We'll know tomorrow.

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

2009-07-19T17:27:00.003-04:00

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

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

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

DAY +45: Nothing New

2009-07-18T19:16:00.003-04:00

Everything is pretty much the same:

more time spent alert and awake (of course, meds help)
nausea continues to be less of an issue
ascites continues to be painful, occasionally requiring pain medication
eating a little, drinking well enough, with intake levels clearly being limited by the ascites

Susan did spend some time today organizing the kitchen. I doubt it was heavy duty, but certainly that's not something she would have been able to do at all a week ago. When we get the next blood results, particularly the bilirubin level, we may be able to judge progress with her VOD, which, again, is the major determinant of her ascites. Expect more days of ho hum news until then.

DAY +44: Holding Steady

2009-07-17T18:55:00.003-04:00

Today's bullet points:

breakfast al fresco (she went outside and she ate)
no lunch per se, but some cheese and cracker snacking
generally more awake/active today
nausea less of an issue (but is this a trend or just a trough in the rolling waves)
ascites bothersome enough today to occasion pain meds
and, just to show that Susan is still Susan, she did some potchky-ing around (arranging) with the pillows outside

In short, she's doing OK, given where she's been. Presumably she'll watch more Mad Men episodes tonight.

DAY +43: the Country Life

2009-07-16T19:18:00.003-04:00

Not a lot to say. No setbacks, but progress will probably be slow enough so as not to be noticeable on a day to day basis. My hope is that we're into a boring phase. Nevertheless, here's today's news, such as it is:

Susan had a hardboiled egg and a slice of toast for breakfast and a milkshake in the afternoon. Bob's planning mac and cheese for dinner
She sat outside by the pool for a bit and they also drove down to the pond
She'll probably watch an episode or two of Mad Men tonight
She has spent more time awake today, but who can say to what extent this is a consequence of the novelty of a new location with more room to roam and more to do vs. some improvement in her underlying condition
Her principal complaint right now is the discomfort from the ascites, which is considerable

It's probably fair to think of Susan at this point as a political prisoner under house and grounds arrest. Come back y'all and visit the blog again tomorrow for more (we hope) non-news.

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

2009-07-15T16:33:00.004-04:00

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

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

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

Here's the exit summary of her medical condition and consult with Dr. Soiffer:

blood counts and platelets continue to be decent and there's no fever
bilirubin is still elevated and hasn't come down this week, indicating that the VOD, although of the mild variety, remains an issue and must be watched closely, as severe VOD is a very serious condition
the ascites continues unabated and most uncomfortable -- the weight gain remains the same, and those pounds (plus more, given muscle mass loss on her near starvation diet over the past 6 weeks) are all accumulated fluid in the peritoneal cavity; this will likely be a multi-week resolution process and dependent on the VOD resolving
Susan remains extremely fatigued and still definitely spends more time asleep than awake, but she has been somewhat more alert, with longer periods of wakefulness, over the past few days; it is expected that her energy level will increase as the VOD diminishes
she continues to have bouts of nausea and continues to take medications for same
MOST IMPORTANT: bear in mind that the gravest concern for transplant patients is graft versus host disease (GVHD - remember, this is all described at the bottom of the blog and in the resource links to the side), and Susan will remain susceptible to this condition for another year or so; the peak danger period is generally 3-6 months out from Day Zero (she's 1+ months out now), but it can strike at any time and anywhere, even in Spencertown or on East 22nd Street

OK. Cici returned to NYC earlier today. Bob and Charley should be just about finished with loading the car by now. They need to make a stop at DFCI, and then it's on, through Boston rush hour traffic, to Spencertown, with Susan clutching a pillow to her stomach to cushion her ascites from the road bumps. Then she'll go to sleep directly or try to watch an episode of Mad Men, season two, and fall asleep almost directly. Then we'll see what tomorrow brings.

DAY +41: Interview with SKS

2009-07-14T18:52:00.003-04:00

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

Blogster: How are you feeling?

SKS: I feel a little stronger, but my stomach still hurts

Blogster: Sounds like the ascites. Are you taking pain medication for it?

SKS: No. It hurts, but it's not that bad

Blogster: Now that you've started on the diuretic for the ascites, are you drinking enough?

SKS: Yes

Blogster: Would you elaborate? Can you quantify that?

SKS: No

Blogster: What will you miss most about your Boston experience?

SKS: Nothing . . . What Boston experience?

Blogster: What are you most looking forward to?

SKS: Not being in the apartment and seeing the house

Blogster: Would you be willing to be photographed so your fans can see your face?

SKS: No.

. . .

SKS: I'm sorry, but I'm not feeling very talkative. I want to go back and watch my show now.

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

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

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

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

2009-07-13T20:12:00.007-04:00

The new apartment:

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

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

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

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

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

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

DAY +39: Mutatis Mutandis

2009-07-12T18:20:00.006-04:00

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

-- ascites discomfort

-- nausea that comes and goes

-- extreme fatigue.

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

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

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

2009-07-11T19:36:00.004-04:00

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

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

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

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

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

DAY +37: a Little More Progress

2009-07-10T18:44:00.002-04:00

Today's bullet points:

Susan is undergoing an MRI as I write-- this is a precautionary test at this point, not an indication of a serious condition about which more diagnostic information is needed; of course we'll let you know if anything concerning turns up
The tests for certain viruses that were potentially serious problems have finally come back and they are negative
Susan does have BK virus, however, but the team is not alarmed, as it should be manageable
The ascites continues, but as the VOD improves (and bilirubin is lower today, suggesting that is what's happening) the ascites should resolve; diuretics, which can be useful in treating ascites, are problematic, given Susan's challenges in taking in enough fluids; if the ascites becomes too much of a problem, there is the option to remove the fluid buildup via paracentesis, but better not to be sticking needles into Susan unless really necessary
She has eaten better today; she took a longer walk; and she is off the IV line -- all good -- but she'll really need constant encouragement to consume enough food and liquids

Believe it or not, there's a chance Susan might be released from the hospital tomorrow, which suggests that, despite the remaining issues, she is making enough progress now not to be dependent on a hospital setting. Maybe there'll be an opportunity for some redecorating in Susan's near term future? Let's hope so.

DAY+36: Tentative Answers; Slight Progress

2009-07-09T18:21:00.004-04:00

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

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

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

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

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

DAY +35: Mostly the Same

2009-07-08T18:37:00.002-04:00

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

There's nothing definitive to report. I'm using words like "may," "might," "seems," "likely," "possibly" because nothing conclusive has been determined.

We're happy that the kidneys seem to be moving towards normal function, but it's too soon to be sure.
We are not happy that the liver, and conditions likely related to it, are not behaving properly. This area is being explored, with more tests/procedures to come in a diagnostic sequence, if/as needed, but it's premature to say what's going on.
It turns out that the tests Susan had for certain viruses that may be at issue take several days or more to provide useful results, so those are still pending.
The fatigue persists.

Bob continues to be impressed with the nursing, so that's a good thing, and we know the right and best doctors are on the case. Let's see what tomorrow reveals.

DAY +34: Nothing Definitive - Wait and See Mode

2009-07-07T20:13:00.004-04:00

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

Medical update:

Susan's kidneys are backing up - the flow is in the wrong direction, per the ultrasound
however, the hydration she's been receiving, by infusion and by mouth, is beginning to have a positive effect; it's too soon to be sure that this is the answer, but Dr. Soiffer wants to give the kidneys more time to right themselves before determining that some other intervention is needed
some of Susan's symptoms, including the ascites, are suggestive of liver issues, but tests, bilirubin levels do not reveal any liver problems; the thinking is these matters will likely resolve themselves in a few days
re. Susan's fatigue: the two most likely causes are (a) certain viruses, and these are being tested for, and/or (b) sustained use of narcotic pain killers, which build up over time when the system's flushing mechanisms cannot keep up with the intake
Vicodin, then, may be the culprit, at least partly (how come Dr. Gregory House doesn't sleep 20 hours a day?), so it is being discontinued - we'll see
Susan, by the way, is on a regular medical floor; no beds were available in the oncology ward, but she does have a private room and Bob says the nursing is first rate. He's satisfied with the situation.

Bob called Linda Drury yesterday about Susan's travails and her need for a 3rd re-admission. Linda, remember, is the marvelous PA for Dr. Lee Nadler, Susan's primary oncologist at DFCI and a senior VP there. Today, Susan received well wishes and an orchid from Dana Farber's CEO. Coincidence? I doubt it. Talk about her case having high visibility. Of course, as a recent transplant recipient, she can't take delivery of the orchid. Duh. I mean, if anyone should be aware of this restriction . . . . Still, it was a very nice gesture. And Soiffer mentioned that Nadler called him today about Susan's situation. It certainly looks like the right and best resources will be brought to bear, as indicated.

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

Let's see what tomorrow brings.

DAY +33: Back in the Hospital

2009-07-06T19:40:00.003-04:00

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

The upshot of today's visit to DFCI:

white & red counts and platelets at OK levels
ditto for liver function tests
kidney function tests, however, revealed abnormalities; an ultrasound is planned to rule out blockages and provide other diagnostic information
without speculating on cause and effect re. the kidneys, Susan has not been taking in an adequate amount of fluids
hospitalization will enable infusions to bring Susan's hydration, electrolytes, and nutrients back to levels her medical team wants to see
Susan's extreme fatigue and excessive sleeping are beyond what is to be expected; the team will also run tests to try and determine cause and appropriate treatment
the ascites persists, too; we hope time in the hospital will enable the team to resolve that issue

Of course, we're disappointed that the report isn't better and we're frustrated by the unknowns. Hopefully, close observation will provide some answers and the treatments necessary to get Susan back on her feet and out of Boston. Meanwhile, the lease on the marvelously situated Mass Ave apartment is up and Bob is now in the process of moving to new digs in Kendall Square, Cambridge.

DAY +32: Again, No Change

2009-07-05T19:00:00.002-04:00

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

DAY +31: Still No Change

2009-07-04T19:39:00.002-04:00

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!

DAY +30: No Change

2009-07-03T19:18:00.002-04:00

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.

DAY +29: The Same

2009-07-02T19:15:00.002-04:00

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.

DAY +28: Holding Pattern

2009-07-01T18:00:00.004-04:00

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.

DAY +27: More of the Same

2009-06-30T20:33:00.003-04:00

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.

DAY +26: No Bad News but No Good News

2009-06-29T20:19:00.002-04:00

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.

DAY +25: a Little Bit Rocky Again

2009-06-28T19:29:00.003-04:00

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.

DAY +25: kind of the same

2009-06-27T19:27:00.002-04:00

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.

DAY +24: Changing of the Guard Redux

2009-06-26T19:56:00.004-04:00

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.

DAY +23: Continuing on Course

2009-06-25T18:37:00.003-04:00

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?

Day +22: a Decent Day

2009-06-24T19:50:00.002-04:00

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.

DAY +21: On Track

2009-06-23T21:01:00.008-04:00

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.

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

2009-06-22T19:51:00.002-04:00

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

2009-06-22T13:28:00.002-04:00

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.

DAY +19 Follow-up: The Eagle Has Landed

2009-06-21T20:39:00.009-04:00

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 !!!!

2009-06-21T17:02:00.006-04:00

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.

DAY +18: Improving again?

2009-06-20T18:32:00.006-04:00

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.

DAY +17: Setback

2009-06-19T20:57:00.003-04:00

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.

DAY +16: Moving in the Right Direction

2009-06-18T18:35:00.004-04:00

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 . . . .

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

2009-06-17T18:26:00.002-04:00

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.

DAY +14: A Tale of Two Patients

2009-06-16T20:05:00.010-04:00

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

2009-06-16T13:21:00.003-04:00

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

DAY +12: Toughin' it out

2009-06-14T16:23:00.003-04:00

Top Line: Pain had receded, now it's back; hoping vicodin will tide Susan over until tomorrow's appointment

Vicodin, which made a big difference in pain level yesterday, has been much less effective today. Still, it is doing something, and we hope doing enough so Susan will be able to hold out until her DFCI appointment tomorrow at 10 AM. If, indeed, the pain is due to rapid engraftment, at some point that does resolve by itself, so most probably this situation just needs the time to run its course.

Also, Susan's throat has come up sore today, and that, combined with the pain, has prevented her from eating, or even drinking beyond minimal amounts. Again, it's something for the medical team to consider tomorrow, so we should know more after her DFCI visit.

As I write, Charley is en route to spend some time with his mother. Bob doesn't know how long he plans to stay. They'll play it by ear, pending clarification of Susan's situation. I'll also be back in Boston tomorrow night with my Charley in tow, but just for a quick stop-in, and will update you from there.

DAY +11: Pain Again

2009-06-13T16:55:00.007-04:00

Top Line: The pain is back, but that's probably a good sign

Susan had a good night's sleep and we were hopeful that she'd be done with doctors and hospitals until Monday. However, her pelvic area pain returned this morning around 10AM. She took vicodin for it, which helped for a few hours.

Bob spoke with Dr. Soiffer, who is actually pleased that the white count has risen so high so quickly and believes that the pain is indeed evidence of engraftment. Nevertheless, the pain does need to be managed. Soiffer wants her to take the vicodin more frequently and try to tough it through until tomorrow morning, when, if the pain hasn't lessened, he will see her in clinic and make a decision about re-admission.

Susan's hopes for a weekend holiday from everything but her extensive pill and potion regimen have been dashed. Nevertheless, this bad news appears to be good news.

As usual, we'll know more tomorrow and will communicate it to you.

DAY +10 and a half: in the apartment and guardedly optimistic

2009-06-12T20:38:00.009-04:00

Now that's Susan is back in the apartment, let's resume the tale of the peeled, cut up potatoes. For all of you who guessed correctly back on Tuesday night as to what the next picture would be, your prize is that you guessed correctly. Bob did indeed make mashed potatoes out of them and served same to Susan, who is seen here eating them. The next morning, of course, is when Susan first developed the severe abdominal pain. Coincidence? She did not want her face to appear in the picture, but trust me, she looks pretty much as usual, although wearing a head scarf.

Top Line: Pain has largely subsided, Susan's back in the apartment, and her progress seems to be on track.

The pain has subsided to the point where Susan/Bob and the med team mutually decided that she did not need to be admitted. She's back in the apartment. She's been given some extra-strength vicodin tablets in case she needs them (think Dr. Gregory House; they work for him), and, worst case, it's only 15 minutes to be back at DFCI.

Today was also the last day of regular infusions and injections. Now, barring difficulties, she will be going on a Monday/Wednesday/Friday schedule of visits to DFCI for monitoring and bloodwork. She gets to hang out in the apartment all weekend with maybe an excursion, mask and gloves on, to the building's roof deck, eating Bob's "cooking" (so again, good news/bad news).

DAY+10: Bad News BUT good news?

2009-06-12T15:53:00.005-04:00

Top Line: Susan's pain has returned in spades, but it may be a sign that the engraftment is taking hold.

Susan had a pretty good night, but mid-morning, shortly after she and Bob got to Dana Farber for the ususal, the pain of the other day returned and was quickly even more severe than before. She's been put on heavy duty pain medications and it's an open question at this point as to whether she'll need to be admitted and kept in the hospital until the pain has clearly receded to levels manageable with home care (i.e., pills vs. infusions).

That was the bad news. The good news is that this kind of pain may be associated with the engraftment making rapid progress. The pain is across her pelvic region and is probably coming from the bones, which is where the donor stem cells are engrafting in the marrow.

Corroborating evidence is the fact that her white counts, which were 1.2 on Tuesday, have rocketed to 17. This is considered a very rapid advance, but certainly not unheard of. Of course, the daily injections of Neupogen have been stimulating the production of white cells, so we can't be sure how much of a role engraftment is playing at this point. They'll know more as they continue to get results from bloodwork and other tests over the next several days.

The urinary tract/kidney infection, which was revealed in the CAT scan, continues to be treated but is apparently resolving. Today was probably the last day for the Vancomyicin and, now that the white count is up so dramatically, the Neupogen. At this point it appears that Susan will NOT need an infusion of platelets or whole blood, which is good.

Speaking of infusions, though, and just to give you an idea of the tribulations in Susan's ongoing saga of the connections, when they went to infuse her today, the PIC line was clogged, so they decided to re-insert a heplock. The heplock turned out not to be useable (remember, Susan's had trouble with heplocks), so they then removed the heplock , returned to the PIC line and applied some kind of anti-coagulant (think Liquid Plumber, but non-toxic), which did the trick, and they were finally able to start infusions. Thank God, because in addition to the Vancomyicin, she's needed two bags of morphine for the pain.

I'll let you know later this evening whether Susan needs to be admitted and if there are any other developments.

DAY +9: Watchful Waiting

2009-06-11T16:40:00.002-04:00

Top Line: Susan's feeling fair. The pain is mostly gone most of the time. The medical team isn't sure what's going on but they believe everything is under control and there's no undue cause for concern.

Susan did not get much sleep overnight, she went through an ordeal yesterday, and her immune system is scraping bottom, so, understandably, she's felt better, but it's not terrible by any means (easy for me to say). She did go through her usual routine today -- vancomyicin infusion, flush, neupogen injection -- without a problem.

The infection that presumably caused all the pain yesterday (but not today) seems to be located mostly in the upper urinary tract and in the plumbing connecting to the kidneys. There appears to be some inflammation in the kidneys. A urine culture hasn't grown anything yet to give more specific information. The medical team believes the antibiotics Susan's now being given will deal with the infection successfully, but, of course, they'll adjust the treatment if warranted by additional developments.

DAY +8 and a half: Urinary Tract Infection?

2009-06-11T08:59:00.003-04:00

The night shift radiologist reading Susan's CAT scan early this morning believes the pain was caused by a urinary tract infection. She was given antibiotics specific to UTIs and was able to leave the hospital about 2:15 AM. The pain, which had subsided spontaneously last evening has not returned.

She goes back to DFCI today for her 11 AM infusion + injection appointment. While she's there, I'm sure Dr. Soiffer will have his day shift radiologist and others look over the scan results and he will see to it that other tests, as may be necessary, are performed to be sure they've got the right diagnosis. Her treatment today would then be adjusted accordingly.

Look for an update later this afternoon when we know more.

DAY +8: Speedbump

2009-06-10T21:58:00.005-04:00

Top Line: While she was at Dana Farber today for her infusion and injection, Susan developed severe stomach pains. As I write (10:00 PM), she's being prepped for a CAT scan with contrast. There is still no diagnosis, hence the scan. Once the doctors know what the problem is, they will be able to treat it appropriately.

Susan and Bob went to DFCI this morning for her usual vancomyicin infusion and neupogen injection, as well as for a consult with Nurse Amy (Dr. Soiffer's Nurse Practitioner). They met with Amy while Susan was being infused and reviewed the most recent bloodwork and Susan's progress vs. expectations. Everything was on track.

In particular, her white count was down to 1.4, which suggests that the bottom is near. We won't know until the count starts back up. The question of any need for platelets or whole blood is still open and will depend on her "numbers," but it is fairly common for this treatment to become necessary and is no cause for alarm.

Also, her bloodwork showed some CMV (Cytomegalovirus), which is a fairly common and treatable condition, and she is being treated.

The problem began around the time that Susan was finishing up with her infusion. She developed severe stomach pains very quickly and out of the blue. Normally, she would have had her neupogen injection at that point, but she waved it off due to the pain, for which she was put on morphine. Dr. Soiffer was called in to examine her but he was not able to tell what was causing the pain except to note that it was not a known complication related to her disease or treatment regimen.

I can't tell you why it took all afternoon and well into the evening to get to the point where they are doing the CT scan, but it did. The good news is that Susan's pain has subsided considerably over the past couple of hours, but they don't know why. She's now in the hour-long process of drinking a gallon of the foul barium-based liquid that supplies the contrast for the scan. Then she'll have the scan. Then a radiologist will interpret the scan, and at that point it will likely be after midnight. Based on what they find and how she feels, she'll either be admitted or return to the apartment.

As soon as I learn more, I'll post it. If there's anything really serious, Bob will call me regardless of the hour. Otherwise, I'll get an update in the morning and post it post haste.

Special Edition: Everything You Wanted to Know about Adding Comments But Were Afraid to Ask

2009-06-09T21:29:00.016-04:00

NOTE: today's update on Susan for DAY +7 is posted below this "Special Edition."

By popular demand, here's a "how-to" for those who don't know how to. It is intended for

(a) those of you who are wondering why/complaining about having to do a "word verification" in order to post a comment
(b) those of you who want to record comments for Susan but haven't because you don't know how
(c) those of you who are tired of commenting as "Anonymous"
(d) those of you who aren't "Followers" and wonder what you're missing, if anything (the "Followers" are those 19 people [current count] listed against their pictures or silhouettes in the green strip off to the right

WARNING !! Terminal boredom lies ahead (pun intended). If you aren't among those described in a, b, c, or d, read no further. It's a long post (I get paid by the word) and dull.

(a) Why "word verification"

Malicious "bots" troll the blogosphere looking for opportunities to post nonsense, advertisements, and even "malware" to blogs that have not defended themselves.
SPAM bots (bots that post SPAM) and other cybernetic bad guys cannot read randomly squiggly writing (sometimes we can't quite either), which is why you are being asked to decipher the squiggly word and type it in, thus proving that you are a human, not a software program up to no good.
If we did not take this precaution for Susan's Recovery Blog, we would risk spurious, and possibly harmful, postings.
NOTE: the word verification is only necessary when you come in as Anonymous or Name/URL or haven't yet signed on to your account ID (if you have one). If you have already signed on to one of the recognized profile accounts with your ID and password, like gmail, for instance, you won't be asked to interpret the squiggly word.

(b) To record a comment:

In the thin white rectangle that runs across the bottom of each posting you will see the word "comments" underlined and a small green dialog balloon icon immediately adjacent to its left. Clicking on either of these will take you to the top of the comments section for that posting. Beneath the most recently added comment is a blank white box (depending on how many comments have already been posted, you may have to scroll down to see it). Position your cursor anywheres within the box and click. You will now be in data entry mode and can type your comment.
Before you can post your comment you must choose a profile from the "Select profile" dropdown menu. The topmost choice is "Google Account" followed by five other much less common on-line profile IDs that some of you may have. If you select any one of these six, the nickname associated with your profile will appear at the top of your comment. If you do not have/select one of these profile IDs, you have the choice of two more profiles: "Name/URL" brings up input fields for you to enter that information, which will then appear at the top of your comment, or you can select "Anonymous," which is what most of us have been doing, not necessarily because we want to, but because we don't have any other online indentity to use. It is not bad to be "anonymous," but if you are, it is ESSENTIAL that you SIGN YOUR COMMENT (i.e., type in your name at the end) or Susan may not know that it is you sending her the comment.
If you select one of the six account profiles and you are are already signed in, then clicking the "Post Comment" button will add your comment to the bottom of the comments for that particular blog post. If you are not yet signed in, a "word verification" box will pop up, and typing in the squiggly word you see will bring you to the sign in page for your identified account. Signing in will cause your comment to post.
If you have selected "Anonymous" or "Name/URL" as your profile, you must then click on the "Post Comment" button, which will bring up the word verification box. Typing in the letters of the squiggly word you see and then clicking the "Finish" button will cause your comment to post.

If you are tired of being "anonymous" and don't have one of the six on-line account IDs (e.g., Google, AIM, et al.) the easiest solution is to let yourself be googlified.
To do this, select as your profile "Google Account" (even though you don't have one yet) and then click on the "Post Comment" button. This will open a word verification window [NOTE: if you are signed in with one of the specified online account IDs, you will not have to do word verification] where you will be asked to type in the letters of the squiggly word you see in order to prove that you are a human and not a machine (like a SPAM bot).
Typing the word in and then clicking the "finish" button will then open a page where you will be asked to sign in to "Blogger" with your Google account. If you already had a Google account (like gmail), but just hadn't signed in yet, you would do so here, but you don't, because if you did, you wouldn't need to read this instruction. Since you don't have a Google account, you'll want to avail yourself of the option at the bottom right to "Create an account now"
Click on it and follow the prompts and you will create your own gmail account, thus giving you the information you need (email ID and password) to sign into your Google account, and so, Blogger.
You don't have to use gmail, you just have to create the account. It's free, it's quick to do, it's easy, and it's part of Google's nefarious plot to googlify the world.

(d) For those who'd rather be Followers than Leaders:

Followers in a blog are simply those people who click on the "Follow" button in the green box and follow the prompts to become a follower. To do so, you must sign in with an account like Google, AIM, Yahoo or a few others. Clicking the Follow button brings you to a screen with prompts to do this.
Essentially, what being a Follower means is that you will be notified on your Blogger Dashboard when there is a new posting to any of the blogs that you "follow" (the Blogger Dashboard is an option that can be visible when you are signed in to one of the approved accounts). It also means that you are publicized in the blog as a Follower so viewers of the blog can see who the Followers are, and see what you look like if you have posted a photo as part of your account profile.

By the way, you do have the option of being a private Follower, which means you get to see but not be seen (i.e., have the blog tracked in your Blogger Dashboard but don't have yourself identified on the blog as a Follower).
As to whether or not to become a follower, it's your choice. It isn't necessary to do so in order to see the blog or to post comments. It can be useful if you're someone who looks at the Blogger Dashboard. Or it may be important to you to know that other people looking at the blog know that you are a Follower.

Hope the foregoing enlightens more than it confuses.

DAY +7: Nothing new to report, but we have PICTURES!!!

2009-06-09T15:07:00.013-04:00

This is a picture of a bowl with cut up pieces of potato preparatory to their preparation as mashed potatoes. [Dan Quayle, note the correct way to spell the plural of potato. (You guys do remember Dan and his potatos [sic], yes?)] Bob has progressed from boiling water and adding something to the water to be boiled to boiling water, peeling and cutting up potatoes and, building upon his hard-learned skill with the pasta, then adding the potato pieces to the boiling water (not shown here). He is very proud of his growing culinary accomplishments.

Bob also sent a follow-on picture to this. You can probably guess what it is, but I'm not including it today since pictures have been hard to come by recently and I don't want to consume the inventory (or the potatoes) in one shot. Tune in again tomorrow to see what becomes of this bowl of cut up potatoes (of such mundane domesticities are cliffhangers made).

And now, for the news of the day:

A perfectly ordinary day, at least for a recent stem cell (aka bone marrow) transplant patient approaching the nadir of her white cell count, with the increasing fatigue and yechy-ness attendant thereunto.

DAY +6 and nothing to report. We like it like that.

2009-06-08T17:48:00.002-04:00

Top Line: Everything's OK, although Susan's feeling a wee bit worse, which is to be expected on Day +6.

The DFCI infusion-flush-injection visit was long but uneventful, as was the consult with Dr. Soiffer. Susan is approaching bottom in terms of her white count and as a result is feeling a bit worse than she had been, but not dramatically so. Nothing worrisome. No need for a platelet infusion at this point.

Bob mentioned that the view of Fenway from the roof terrace yesterday inspired them to watch the RedSox game on TV. The Sox lost which made Bob happy. Speaking of the roof, Susan went up there today to perambulate in the fresh air (masked and gloved, of course). It gives her a change of scenery, which is nice.

These posts are getting briefer, which is also nice. Tune in again tomorrow.

DAY +5: Graduating to Pasta

2009-06-07T22:12:00.006-04:00

Top Line: Same as yesterday and the day before and the day before that

When the news of the day is that Susan had pasta for dinner, instead of her usual PB & J sandwich, you know there's no news, which is good news. Let's not make more of this than it is though: when I pushed Susan about what it actually meant to have pasta for dinner, she admitted that it was Bob boiling water to cook spaghetti, and then heating up a jar of marinara sauce in the microwave to put over it. Elegant dining on Mass. Ave. She's afraid to let him try his hand at pizza again. Still, this is progress. By the way, in addition to bananas, Susan's also snacking now on Hostess cupcakes. Without milk, though, which misses the point.

By the way, a few posts ago I decribed the environs in which the Siegels find themselves. Susan reminded me of one landmark I missed. From the roof of the building, according to Bob, you get a nice view of Fenway Park, which is only a block or so away

Dana Farber was like yesterday -- infusion, flush, injection. What's new is that Susan's platelet count is still high enough not to require any additional platelets, which is considered good. Tomorrow will feature a double infusion, methatrexate in addition to vancomyicin, as well as a flush and a neupogen injection. Also, she'll be meeting with Dr. Soiffer tomorrow, so I expect there will be something to report from that.

Finally, it's another day of posting without a picture. We haven't featured a picture since last Wednesday. Bob doesn't send to me, I don't have anything to post for you. You want pictures, use your comments to shame Bob into snapping some more photos.

DAY +4: Changing of the Guard

2009-06-06T23:09:00.009-04:00

Top Line: Same as yesterday, i.e., Susan's feeling fatigued, with a persistent substrate of low level nausea that occasionally spikes to real but manageable discomfort. Otherwise, she's fine. No, it's not an "other than that, how did you enjoy the play, Mrs. Lincoln." She really is doing reasonably well most of the time. It's only when you ask that she trots out the Y word (yucky, or sometimes, yechy).

Today was uneventful. Yes, Susan did have an infusion of vancomyicin and a flush of her PIC line, along with an injection of neupogen, which altogether took close to 3 hours to accomplish, but that's become very routine by now. Tomorrow, it will be more of the same. Otherwise, she spent the day hanging out and catching up on her blog. Keep those good wishes coming. This evening Susan and Bob watched The Thirty-nine Steps, a 1935 Alfred Hitchcock thriller, and a definite 38 steps up from her usual fare. Must have been Bob's idea.

The "changing of the guard" refers to Bob returning to and me leaving Boston, sort of like the baton exchange in the 1600 meter relay, or even more accurately like the first team returning to the floor after a breather (thank God the second string guy didn't blow the lead).

By the way, this post is coming to you late because our internet connectivity in the Boston apartment mysteriously disappeared today. It'll probably reappear just as mysteriously at some point. Couldn't produce today's edition until I got home.

More tomorrow. Actually, let's hope its even less tomorrow, since no news is good news.