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.

Update from Callie

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

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

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

-Callie

DAY +12: Toughin' it out

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

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

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?

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

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?

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

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

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.
  

(c) How to lose your anonymity:

• 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!!!

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.

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

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

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.

DAY +3: Dullsville (a great place to live)

Top Line: Susan's the same, feeling mostly OK, but extremely fatigued with nausea that comes and goes.

Bob left this morning, stealing out while Susan was still sleeping. He claimed it was because he needed to take care of some things back in the City. I think the real reason is profound embarrassment over the Great Boston Scorched Frozen Pizza Fiasco (GBSFPF). Maybe I shouldn't have outed him in the blog. Bob will likely return sometime Saturday afternoon to early evening. For the interim, I'm sole cook, housekeeper, chauffeur, and first-line medical alert worker, in addition to my duties as blogster.

Susan has spent the afternoon, from noon on, at DFCI. The dripping should have dripped its last drop fairly soon now and we should be out by 6PM. Today it was Methatrexate, a preventative for Graft Vs Host, followed by Vancomyicin, an antibiotic, and an injection of Neupogen. Of more interest, we also had a consult with Amy of the Many Initials. Everything seems to be on track, but here are some highlights of what we learned (you always get more out of a good nurse practitioner or physician's assistant than you do out of the doctor):

• Somewheres around the point where Susan's white cell count reaches its nadir (Day +6, or Monday, give or take), Susan may well need an infusion of platelets. Depending on her numbers, she may also need whole blood.
• The main risk during the first month or so is infection, which is serious business when you don't have an immune system worth mentioning. It is signalled by fever. Of course we're on watch. The most dangerous week will be next week; then the graft starts to take.
• The risk of infection subsides with the strenthening of the immune system, thanks to the donor stem cells successfully engrafting. By Day +30 or so, corresponding to the point when Susan is cleared to leave Boston and close proximity to DFCI, the concern over infection subsides, to be replaced by fear of GVHD.
• The risk of Graft Versus Host Disease begins to increase around this time and is actually at its greatest in the 3-6 month period following the transplant, so September through November will be a period to be especially alert to any symptoms that might develop. Beyond the first 6 months, there is still the risk for chronic GVHD, which continues through the first year plus.
• With the "mini" allogeneic (or non-myeloablative) transplant that Susan had, the risk of Host vs. Graft (where Susan's body rejects the donor stem cells) is small.

Tomorrow, it's back to DFCI for another round of I&I, aka infusion and injection. The appointment is for 10AM. That's going to be a challenge for Susan.

More tomorrow.

DAY +2: Ho Hum (and that's how we like it)

Top Line: Susan's doing well and feeling pretty good, except for fatigue and occasional nausea.

No photographs today. Get on Bob's case if you miss your pix fix.

News of the day:

Susan got up, took her pills and potions, took a shower, and then it was 2:30 (she's moving slowly) and time to leave for Dana Farber (DFCI).

At DFCI, Cary the Infusion Nurse infused the antibiotic still being administered as a precaution, given the recent PIC line infection. Drip, drip, drip for two stultifying hours. Some might call it a variant of the Chinese Water Torture, but not Dick Cheney. Susan also received her Neupogen injection to promote the generation of white cells.

A bonus was a happenstance drop-by by Amy Joyce, MSN, ANP, AOCN, who is Dr. Soiffer's Nurse Practitioner. Yes, you could make 3 additional names out of all the letters following hers (a little short on vowels, though; it would have to be something in Krygyzstani); we have no idea what the letters mean, but she's very good.

Amy informs us that the nadir of Susan's white cell count should come somewheres around Day +6, which is next Monday, so she will be increasingly vulnerable, and possibly increasingly weaker and "yech-ier" through that point, and then start to improve. The donor stem cells are in the process of setting up shop, but don't get their act together in terms of showing a real effect until somewheres in the Day +10 - Day +14 range. Thus the first period of big concern is next week, and we'll need to be hyper vigilant for any sign of fever, which would be the harbinger of issues, and require an immediate trip back to the hospital.

Amy anticipates another 10-12 days of Neupogen injections, and so daily visits to DFCI, until the white count is up sufficiently. That's it for medical news, for now.

Turning to the domestic front:

There's lots of cleaning and Clorox Wipes-ing going on, and we have Purell Hand Sanitizer bottles sprinkled liberally about the apartment. The box of masks and gloves on the table by the door are for Susan, when she ventures out to DFCI, and will be for any visitors. Shoes are left at the door. Bob made dinner for us last night -- a frozen pizza which he managed, with the aid of our high tech oven, to transmogrify into a black petrified disk. I made myself a bowl of cereal. Susan has been eating a little, mostly peanut butter and jelly sandwiches and bananas. She doesn't eat her crusts. So what's changed? The apartment is a reasonably spacious (1200 sq ft), two bedroom, two bath affair, nicely laid out with good parquet floors throughout and totally devoid of personality.

The apartment is one of c. 400 units in the 12 story megalith that consumes a city block. The street level is all commercial and, by turns, useful, tantalizing, irrelevant, and, in places, dangerous:

• CVS Pharmacy, hours 7AM-midnight - all the drugs you could want, not that Susan doesn't have enough already, plus toothpaste. This is good (and they have ice cream and OJ, too)
• Radio Shack - could prove useful
• Floyd's Barber Shop, for Men and Women, for Bob maybe at this point
• Anton's Cleaners - definitely useful
• Economy True Value Homeware and Hardware - they've actually got some nice homewares; this one could be dangerous
• H&R Block - April's news. fuggedaboutit.
• USPS - maybe there'll be a package to mail? You never know.
• GNC - nice idea, but Susan's drowning in pills as it is
• Fern (a florist in case you were in doubt) - That one's a frustration: she can look but she cannot enter
• Blockbuster Video - but once Susan's exhausted their supply of dumb romantic comedies, then what?
• Cartridge - do we really need a store that specializes in printer cartridges? Actually, Bob's brought a printer up with him, and we might
• The Dental Practice of
  - Richar Carr, DDS
  - Bahram Ghassemi, DMD
  - Ronald Jay, DMD
  - Badrieh Edalatpout, DMD
• Bon Bon - crepes, gelatos, and fellow travelers; ostentatiously French, vigorously Italian, and definitely off limits
• Tomodachi Sushi - no sushi for susi
• Boston Market - not even a temptation . . . too much gravy
• Au Bon Pain - located directly downstairs. Susan the Francophile, outcast from life's feast; this one's going to be tough 
• and then there are the banks: Royal Sovereign and Bank of America - this is a serious potential problem. Think surveillance cameras and guards, and when Susan leaves the building she is masked and gloved.

The building is located behind Symphony Hall, with the Boston Horticulture Society Building on the next block for the botanically inclined (off limits to Susan for now), a Whole Foods across the Street in the other direction, and just across Mass Ave from the building's front, The Christian Science Publishing Society, Founded by Mary Baker Eddy (remember?) as the engraved inscriptions above the lintel inform. In otherwords, a most beneficent location just a few steps for anything necessary for the health of body, mind, and soul.

More tomorrow.

DAY +1: JAILBREAK !!!! - Continued

The

FINAL FLUSH

Nurse Meg administers a saline + heparin solution to flush Susan's PIC line in preparation for her discharge. Susan requested that  her face not appear, but the photographer sneakily cropped in her nose, a distinguishing landmark jutting out from the plane of Susan's physiognomy, to prove that it was she.  The blurriness of the image, the result of a shaky hand, is due to the photographer's apprehension over being caught out in his subterfuge. The masked figure in the background is your faithful blogster, who was not  willing to entrust the reporting of this historic moment to a third party source.

After 6 days, 22 hours, 35 minutes as a registered inmate, Susan was discharged from Brigham and Women's Hospital at 6:25 PM, June 03, 2009.  At 6:45 PM, she arrived at the apartment which is to be home for the next month . At 6:49 she informed her brother: "This furniture needs to be rearranged."  Just in case you were wondering how she's feeling.  We repositioned one of the loveseats, the coffee table, and a chair.  That satisfied her for perhaps two minutes, when she stood up, sized up the rather handsome print over the second loveseat (which, mercifully, remains in place . . . for now) and declared: "That picture is hung too high.  We should lower it."

Highlights of the day: 

• The word is out. Has been for days. Room 53 on 4C is Party Central. Of course, this morning again there was the usual parade of nurses, nurse's aides, interns and residents on teaching rounds, and the obligatory visit by the Team of Five (the Brigham doctors assigned to Susan's case, in addition to Dr. Soifer, her transplant lead) who offered up their customary fare of sage clucking and hmm-ing to no purpose and then left, leaving us none the wiser (them neither) for their visit.
• Kristen the Nutritionist spent an hour with us going over the do's and don'ts of Susan's diet to be (it's mostly don'ts).  Some of it Susan can handle just fine, like no fresh uncooked broccoli rabe. In fact, salad bars and buffets are verboten for at least a year. But the prohibition against camembert, feta, gorganzola et al. is going to be difficult to swallow, oops, make that not swallow.  I mean, this is "the Brie Lady" we're talking about. And there's no restaurant food and no takeout. That might work in Peoria, but how's a New Yorker to live? 
• Then it was AnnMarie the Line Lady's turn.  She's with Coram Healthcare and they are everywhere.  Takeout may be off limits, but Coram delivers, even in Spencertown, NY, in case you need something in a quick infusion, or it's flush time and you're flush out of saline.  Heplocks, PIC lines, and fellow travelers . . . Coram will make sure Susan is always well supplied.
•  Then Nurse Melissa, whom we had never seen before and never will again, popped in to make the drop, a black canvas tote with a CVS logo filled with drugs.  We knew it was serious when inspection showed among the contents a 28-compartment pill box, in laquered purple: morning, noon, evening, bed columns under the row for the seven days. The courier was gone before we could ask what it was all about, but I think Susan gets to keep the tote.
• Then Nurse Meg, her of final flusher fame, took her star turn.  Meg took us through specifics of daily life -- what Susan and those she comes in contact with can and can't do -- and the intricacies of the 27 different pills and potions that Susan needs to take daily, being careful to manage for interactions, with/without food, time before/after something else, etc.  Meg also handled all the discharge paperwork and dealt with hiccups like missing meds that hadn't been ordered and now required that a script be written.  Put it all together and the 2:30-ish departure became 6:25.  

So, Susan is out, but not out of the woods. It's no walk in the park (in fact, she's not allowed to go to the park yet). Susan's full-time job for the next several weeks will be to manage her medications.  Tomorrow, its back to Dana Farber for bloodwork, an infusion, a line flush, and a consult with Dr. Soifer.  Then again on Friday, and through the weekend. The daily routine will continue until her neupogen infusion regimen (to stimulate white cell production and rebuilding of the immune system) has been completed. Then it will be 3 days a week to Dana Farber, and after Susan leaves Boston, she'll need to make weekly visits.

Bottom line: Susan is feeling "pretty good" (she authorized that quote).  More tomorrow.

DAY +1: Jailbreak !!!!!!!!

In a holding pattern waiting for Nurse Meg to complete the discharge papers and then take Susan and Bob through the meds protocols and other continuing care instructions for life on the outside. Susan should be released from her cell somewheres around 2:30-3:00 PM today, and then it's on to house arrest at 255 Massachusetts Avenue, Apt. 702, Boston, MA 02115.

More to follow when we've relocated to someplace where I don't have to type with gloves on.

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 it 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.

Monday Evening Update

Not a lot of news, which is good. Mostly we are in a holding pattern, waiting for tomorrow and the infusion of the donor stem cells. Be advised, this climactic event is not at all climactic in the happening. Susan simply gets another infusion through her PIC line, but this one is stem cells rather than chemotherapy drugs.

At this point, we do not know when tomorrow it will happen, as the frozen stem cells need to be flown in from wherever the donor was located (they don't tell us where that is, because then they'd have to . . . etc.) and then validated through some elaborate protocols, which is reassuring. I'll post from Susan's room when it begins, and again when it is completed.

Susan did not have a good day today; nothing dramatically wrong but in Bob's words she was feeling "lousy," or in Susan's "yucky." Take your pick. This is not unexpected after 4 straight days of chemotherapy. She'll probably feel a little better tomorrow. She continues to be on the antibiotic for the infection and to be receiving nutrients, including potassium and magnesium, which were found to be low, and saline solution through her heplock. Stay tuned for tomorrow's update.