Tuesday, June 30, 2009
Monday, June 29, 2009
- 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)
Sunday, June 28, 2009
Saturday, June 27, 2009
Looks like we'll be waiting until Monday, with her blood work and doctor's consult, to know more.
You'll know what I know when I know it.
Friday, June 26, 2009
Thursday, June 25, 2009
Wednesday, June 24, 2009
- 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
Tuesday, June 23, 2009
Monday, June 22, 2009
Sunday, June 21, 2009
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).
Again, the top line trumpets the good news, but here's a bit more detail:
Urinalysis has revealed the presence of a "BK virus" which the doctors believe is the culprit in Susan's recurring pain (and other unpleasant symptoms which I haven't been blogging about). You can google "bk virus" if you want more information, but the short story is that it can present with kidney problems (check), fever (check), narrowed ureters (check). According to one source, "BK virus was associated with cases of acute haemorrhagic cystitis following bone marrow transplantation." That also sounds like a check.
Why it's taken this long for the doctors to come up with this diagnosis, given what a lay person learns in a 5 minute internet search, is an open question (isn't there a doctor in the "House"?). However, it's good news, so we'll take it. My information is second hand, via Charley. When Bob, who is still in NYC, is able to connect with Dr. Soiffer, we'll likely learn more.
Susan did receive a blood transfusion overnight (she was up until 3 AM as they gave her PIC Line what we hope will be its final workout). She is understandably exhausted, then, but feeling "kind of OK" under the circumstances. She's in the process of being discharged and, barring the unforeseen, will not need to return to DFCI until a Wednesday AM appointment.
Callie and Nate, who were up for the weekend, returned to the City today (is Brooklyn classified as part of "the City"?), but Charley is still in Boston and Susan's friend Ceci Wynant is en route to help out and keep Susan company until Bob's return.
Saturday, June 20, 2009
Things seem to be moving in the right direction, but we've said that before. Susan's medical team ordered the renal ultrasound, which was negative. That suggests that the inflammation has diminished, which is good.
Susan's numbers continue to be good, except that her hematocrit is now low enough that the team is planning on a whole blood transfusion. This is pretty usual, and not a cause for concern, and her platelets continue to be good.
Susan has been relatively pain free today and she has eaten some french toast and mashed potatoes. Aside from the transfusion of whole blood, there are no other plans at this point for interventions or treatments. Let's keep our fingers crossed.
More tomorrow early evening, or as events unfold.
Friday, June 19, 2009
The oncology stuff, anything directed related to the transplant, continues to look good. Unfortunately, the pain, which seems to go away for a while, has returned again. None of the tests they've been able to think of --CAT scans, cultures of everything, blood analysis for any kind of agent, factor, trace -- have yielded a clue to the underlying problem.
Susan is back on vicodin for the pain, and that's working so far. Hopefully, she'll have an OK night. Bob spoke with Dr. Soiffer late this afternoon and he confesses to being mystified. He's done probably a thousand or more stem cell transplants and has never seen what Susan is presenting with, so almost certainly it is not transplant related.
The team will reconvene to decide how best to proceed, but it looks now like the cytoscopy with possible stent is back on the table, as is the renal ultrasound. One thing is clear, the possibility of her returning to the apartment tomorrow is off the table. Susan has to prove that she can eat and drink sufficiently, take all her meds by mouth, and go 24 hours without any need for pain medication.
I'll update you sometime tomorrow when we know more.
Thursday, June 18, 2009
- 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
Wednesday, June 17, 2009
- 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)
Tuesday, June 16, 2009
- 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.
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...
Sunday, June 14, 2009
Saturday, June 13, 2009
Friday, June 12, 2009
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).
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.
Thursday, June 11, 2009
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.
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.
Wednesday, June 10, 2009
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.
Tuesday, June 9, 2009
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.
- 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.
- 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.
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.
Monday, June 8, 2009
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.
Sunday, June 7, 2009
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.
Saturday, June 6, 2009
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.
Friday, June 5, 2009
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.
Thursday, June 4, 2009
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.
Wednesday, June 3, 2009
- 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.
More to follow when we've relocated to someplace where I don't have to type with gloves on.
Tuesday, June 2, 2009
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, June 1, 2009
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.