DAY +30: No Change

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

DAY +29: The Same

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

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

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

DAY +28: Holding Pattern

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

The big news today was another DFCI visit, and these are the results:

• blood counts decent: white - 7.2 (normal range), red - 3.3 (low-ish but not too bad)
• platelets: 44, up from 19 on Monday, but still low
• Liver function is normal
• still some ascites (peritoneal cavity fluid accumulation), probably residual from liver issues

On the whole, Dr. Soiffer is comfortable with where Susan is at (easy for him to say), given where she's been. However, he does think it prudent to keep her on a short leash for a bit longer, in particular to make sure that the ascites resolves. He's on call this weekend, which is good, just in case. Susan's next appointment is Monday. Maybe she'll get her clearance at that point?

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

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

More tomorrow, of course.

DAY +27: More of the Same

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

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

DAY +26: No Bad News but No Good News

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

Here's what I can tell you from Susan's DFCI visit today:

• Susan's platelets, which had been up over 500 before backing down to a normal-ish 200+, were 19 today (much too low)
• Susan had been taking Valcyte to prevent CMV infection (cytomegalovirus), which is a potentially very serious problem for immunocompromised patients
• Valcyte's side effects can include
  -- anemia and other blood abnormalities [including reduced platelets] - check
  -- high blood pressure - check
  -- diarrhea - check
  -- nausea and vomiting - check
• Susan was given a platelet insfusion today (which may help with the fatigue), along with saline solution, and has been taken off the valcyte
• Susan also had an ultrasound of the abdomen, occasioned by a slight liver abnormality, and also a trace of ascites, that showed up on tests today; the results were negative, so she's likely OK there
• Susan's blood pressure, which had been low, was too high and she's now on a new medication for that
• Her red and white counts are decent and her weight is stable (don't ask me how, with all that she is not eating)

There's just enough going on that the hoped for Wednesday departure from Boston is now in question. Susan is scheduled for another round of tests and examination/consultation on Wednesday, and we'll have the word based on that.

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

DAY +25: a Little Bit Rocky Again

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

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

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

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

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

DAY +25: kind of the same

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

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

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

DAY +24: Changing of the Guard Redux

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

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

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

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

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

DAY +23: Continuing on Course

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

Don't you love short posts?

Day +22: a Decent Day

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

Overnight sleep - decent

Pain level - mild to non-existent

Nausea: continues to be under control, thanks to premptive Atavan strikes

Overall physical comfort level - satisfactory

Breakfast: banana and half a roll

DFCI visit

• Susan's doctors feel she is now coming along well
• Susan is still somewhat immuno-surpressed and was given an IVIG infusion today (intravenous immunoglobulin); the rationale was that this treatment is a "twofer" -- it would deal with the last lingering traces of the BK virus as well as beef up her immune system
• her next DFCI visit is scheduled for next Monday,6/29
• Monday to be followed by a Wednesday visit and, if all continues to go well, permission to leave Boston - that will be real progress

Lunch: scrambled eggs and cheese (sorry, don't know how many eggs or what kind of cheese)

Afternoon's diversion: DVD for first 3 episodes of first season of "Mad Men" (I gather it's a television series) -- Susan was engaged and enjoying it until she fell asleep during the 3rd episode

Dinner: ravioli is planned (Susan's sleeping right now, but when she wakes up)

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

DAY +21: On Track

Praise and Thanks to the Caregivers

Charles Siegel

Cynthia (aka Cici) Winant

Note the new resource listing in the right panel:

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

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

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

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

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

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

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

Tune in again tomorrow.

DAY +20: Coming Along

Mid-day bulletin:

• a good night's sleep
• continuing pain-free
• hard-boiled egg for breakfast
• sipping water and OJ frequently
• Still very tired, feeling worn out from the ordeal

Sounds like the right direction, finally. More tonight.

DAY +19 Follow-up: The Eagle Has Landed

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

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

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

DAY +19: Goin' HOME !!!!

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

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

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

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

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

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

DAY +18: Improving again?

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

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

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

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

More tomorrow early evening, or as events unfold.

DAY +17: Setback

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

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

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

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

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

DAY +16: Moving in the Right Direction

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

There's not a lot of news, which is good news. Here are the day's highlights:

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

For those who've asked about sending flowers, DON'T. No fruit baskets either. The thought, however, is much appreciated.

More tomorrow . . . .

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

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

Let's start with the good news . . . . The top line tells the story but for those who want detail:

-- white cell count - 7.8 (normal range)

-- red blood cells - 3.1 (below normal range but good for transplant patient 15 days out)

-- platelets - 590 (quite high, which is good at this stage)

-- temperature - 97.8 (normal for Susan)

Also, Susan was feeling a little bit better (or rather, less bad) from mid-afternoon on. In part this is due to the morphine (Susan is single-handedly supporting the economy of Afghanistan) but also, perhaps, to the Toradol she is now receiving. Toradol is an anti-inflammatory and pain reliever. Of course, as the inflammation subsides, so should the pain. Her mucositis may be a little better, but the improvement is so subtle to this point that it's hard to be sure.

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

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

The current plan is to let the Toradol and the several different antibiotics Susan is receiving continue to do their work, as there does appear to be progress (e.g., normal temperature, waning inflammation), and to provide pain medications as needed. Anything and everything that can be cultured is being cultured (except Bob, who is cultured enough already), but so far, the results have been negative. If she does not continue to improve, the medical team is considering

• bringing in a nephrologist (kidney specialist) to supplement the urologists on the case
• consulting with an Infectious Disease Specialist
• administering a renal ultrasound (this non-invasive diagnostic would be in lieu of the cystoscopy, which they have decided has too much risk for the potential benefit)

That's the news to date. I'll keep you all posted as developments (or the lack thereof) warrant. Let's hope and pray that Susan has a good night.

DAY +14: A Tale of Two Patients

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

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

Yesterday was difficult, with Susan arriving at DFCI in pain for a 10 AM consult and spending the entire day being tested and evaluated before finally being re-admitted, but there's no need to recount the blow-by-blow now that it's history. As of this evening, here's the situation:

• Thankfully, the pain subsided by this morning to a point where she has not needed morphine today
• She continues to be on antibiotics to deal with the fever and the inflammation that now appears to be localized primarily in the right kidney.
• The fever may be the result of the inflammation which may be the result of kidney stone(s) which may or may not have been passed. All of this "may-ness" is indeed because the doctors are uncertain. The CT scans that have been done are inconclusive.
• What can be done (and may be done tomorrow to provide some clarity) is a cystoscopy to examine the urinary tract up to the kidney with the possible insertion of a stent to relieve pressure and facilitate passing whatever needs to be passed
• However, the procedure and the stent risk introducing bacteria and further infection, and Dr. Doyle, her lead urologist, prefers to give the antibiotics more time to show results. If the fever and inflammation have not improved significantly by tomorrow, then the cystoscopy becomes likely
• Susan also has oral mucositis (the "sore throat" I reported Sunday), which is a painful inflammation and ulceration in the mouth and throat. Understandably, she hasn't been able to eat, but she's getting nutrition and fluids intravenously and is able to sip enough to continue working at her full-time job -- taking a gazillion pills a day. Mucositis is commonly experienced by transplant patients, and those undergoing chemotherapy and/or radiation, so this is not unexpected. It does seem to be abating, but it's too soon to tell whether this is a slight and temporary lull or real improvement on the way to resolution.

Finally, your comments are not trees falling in the forest unheard. Susan wants everyone to know how much she appreciates all the good wishes and encouragement you've been sending her (keep 'em coming), and she apologizes that she's not yet feeling up to responding to you individually. Hopefully, the day will come soon when she's back in touch with each one of you by email and phone. REMINDER: those few of you who are posting comments as "Anonymous" and not signing them (typing your name at the end), you truly are anonymous. Unless that's your intention, time to fess up so Susan can tell you're you.