Susan's Recovery Chronicle: DAY +1: JAILBREAK !!!!

Wednesday, June 3, 2009

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.

2 comments:

UnknownJune 3, 2009 at 9:23 PM
This was such a complete picture of Susan's day, Jerry, for which I am hugely grateful, since I wonder about what is going on several times a day. Nice to know she is somewhere she can re-arrange furniture and that she felt well enough to do some and comment on future picture hanging. Now, THATis really heartening. It must be great to be OUT of the hospital.
The food business sounds complicated. I guess it means someone there must do the cooking for Susan in the apartment so it is fresh and uncontaminated by any of the things the food could pick up in a restaurant kitchen or on a bicycle on the way to the apartment. Is this responsibility going to be Bob's, Jerry's, rotated?? Or can you get someone to come in and do it?
Please give Susan my love and tell her I hope that there will be visitors, if allowed, and other happier things between managing meds and going to Dana Farber. Diana
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David FinkJune 4, 2009 at 3:43 PM
Susan re-arranging furniture? I'm shocked, shocked to hear she would ever do that! Sounds as though recovery is going very quickly. That's great, Susan.
Love,
David
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Susan's disease

Chronic Lymphocytic Leukemia (CLL) is a slowly progressive form of lymphocytic leukemia, characterized by an increased number of B lymphocytes, one of 5 types of white cells in the marrow and blood (hence the concern when white cell counts are elevated). The role of B lymphocytes is to produce antibodies to help combat infectious agents such as bacteria and viruses. With CLL, B lymphocytes multiply unchecked and, in the absence of threats to combat, will attack healthy cells and tissue. It is common to experience enlargement of the lymph nodes and spleen as the disease progresses. CLL is the most prevalent form of leukemia and occurs predominantly after age 55, although Susan, ever the precocious one, was 50 when she was diagnosed.

Susan's diagnosis came in December, 1999, when routine bloodwork revealed an abnormally high white count. After evaluating the several world class cancer centers in the US, she settled on Boston's Dana Farber Cancer Institute (DFCI), affiliated with Harvard Medical School.

Susan was fortunate to be introduced by mutual friends to Dr. Lee Nadler, a Senior Vice President at DFCI and Professor of Medicine at Harvard Medical School. Dr. Nadler, who does not normally take on a patient load, agreed to become Susan's primary oncologist and has, over the years, arranged for her to see the appropriate specialists as needed, whether at DFCI or other institutions.

Susan underwent a regimen of chemotherapy from May through September of 2001 which provided her a strong remission lasting until the Spring of 2005, when elevated bloodcounts indicated that additional treatment was required. Tests revealed that the locus of the disease at that point was in her spleen, and she underwent a successful splenectomy operation in August 2005, enabling her to reestablish her remission.

Of course, there's a wrinkle. Over the past couple of years blood sample analyses have shown the presence of both Hodgkins Lymphoma and non-Hodgkins Lymphoma cells, suggesting that the disease has been morphing, muddying the waters as far as a clearcut diagnosis is concerned. There is no label for what Susan has (we are calling it a variant of CLL, for simplicity's sake). However, it doesn't really matter. The course of treatment at this point is the same: a stem cell transplant.

Although Susan has been fortunate enough to be essentially asymptomatic all these years, her white cell counts have gone up as high as 320,000, only to be brought back down to a reasonable level through chemotherapy. To put that number in perspective, a healthy individual's count usually ranges between 4,000-10,000. The fact that she doesn't look sick and generally feels fine does not mean that she doesn't have a serious and progressive illness.

From the beginning, Dr. Nadler had indicated that at some point the disease would advance to where the best course of action would be a transplant procedure, which is dangerous but potentially curative. That point is now.

Susan's Transplant Procedure

RATIONALE for the TRANSPLANT

While the right protocol of chemotherapy can produce a remission in patients with blood cancers, these remissions are almost always temporary, not curative. The number of remissions a particular patient's disease may enable him or her to realize is very limited - sometimes only one, sometimes several - but in general any successive remission(s) is less robust and of shorter duration. The time comes when the best approach is to go for a cure, which is what a successful blood and marrow stem cell transplant can offer. The transplant entails significant risks (as outlined below), but Susan is at the point where the benefits of another remission (if successfully achieved) might be fleeting and leave her less able to tolerate the transplant at some future date.

BLOOD and MARROW STEM CELL TRANSPLANTS: the SHORT COURSE

Blood, despite its homogenous appearance as a red fluid, is actually a very complex medium that contains many different factors, all of which are generated by a person's bone marrow. In a blood cancer like Chronic Lymphocytic Leukemia (CLL) these components of the blood become unbalanced. A person with CLL produces an ever increasing quantity of white cells in the blood over time, particularly B lymphocytes.

White blood cells , including lymphoctyes (B lymphocytes, T lymphocytes, et al.) act as the body's defense against infection and other foreign bodies, and so they naturally increase to combat such threats, but when the threat has been eliminated, the white cell count returns to its normal level. To oversimplify, elevated levels of white cells, pumped out by malfunctioning bone marrow, with no disease or infection to neutralize, begin attacking healthy tissues and systems. This is the case when a person has CLL.

If the bone marrow which produces the white cells can be restored to its proper functioning, then the white cell count will return to normal. A blood and marrow stem cell transplant can achieve this by largely destroying the sick person's marrow through chemotherapy and/or radiation and then replacing it with healthy marrow. To be more accurate, it is not the physical marrow which is destroyed and replaced but rather stem cells within the marrow responsible for the production of red cells, platelets, and the various kinds of white cells, including the lymphocytes. Therefore, the procedure is most accurately called "Blood and Marrow Stem Cell Transplantation" or Stem Cell Transplantation, although it is often referred to loosely as a Bone Marrow Transplant since the diseased marrow is being regenerated via the healthy stem cells of the donor.

There are two basic kinds of Transplants: autologous and allogeneic. In the autologous version, the patient's own stem cells are harvested during a period of strong remission when healthy stem cells predominate. The blood or marrow with the healthy stem cells is then frozen for later use when the disease has returned in force. In the allogeneic version, the healthy stem cells are provided by a donor whose tissue type closely matches that of the recipient. Susan will be having an allogeneic transplant.

In fact, there are two types of allogeneic transplants - the full or standard transplant (myeloablative transplant) and the so-called "mini-transplant" or "reduced intensity transplant" (non-myeloablative transplant). The standard transplant involves very high doses of chemotherapy and/or radiation in the conditioning phase (the week prior to the transplant), which is very hard on the recipient's system. The mini-transplant involves less intensive conditioning and is better tolerated by older patients (roughly 55 years old and up; Susan, like Jack Benny, is 39 . . . for the 22nd time). The standard transplant works by destroying the diseased bone marrow nearly completely, but with very significant stress on the recipient's system. The mini-transplant works by relying on the donor's immune cells, whose efficacy is bolstered by a drug protocol, to destroy the remaining cancer cells. Susan's medical team has determined that the mini-transplant is the most appropriate procedure for her.

The week or so prior to the actual transplant is referred to as the "conditioning phase" and is used to destroy as many of the cancer cells as possible as well as to suppress the patient's immune system to minimize rejection of the donor's cells. This is done via chemotherapy and/or full body irradiation, and can be very taxing. The actual transplant procedure is similar to a blood transfusion but takes several hours to accomplish.

In the immediate post-transplant period, the patient's immune system is severely compromised and he/she needs to be kept in a protected environment (first the hospital and then a kind of half-way house) and closely monitored. Within a month or so of the procedure, normal blood function is re-established to a degree sufficient to allow the patient to return home, but the environment needs to be very carefully managed to minimize infectious agents. Chronic Graft Versus Host Disease (GVHD - see below for "Risks") can be a significant risk for a year or more after the procedure.

RISKS

The conditioning procedure for an allogeneic stem cell transplant may produce a variety of unpleasant side effects, from mild to quite severe, but these are generally manageable and not considered life threatening. Because it involves a less rigorous conditioning, the "mini" version of the allogeneic transplant (the kind Susan is having) generally causes fewer and less difficult complications. However, there are still three major risks to consider with an allogeneic transplant :

1. Disease or infection.
The conditioning process essentially destroys the patient's immune system, leaving him or her virtually defenseless against disease or infection in the pre- and immediate post-transplant period. Therefore, it is extremely important that the patient's environment be carefully controlled to minimize contact with infectious agents. Measures include filtering the air in the room, requiring visitors to wear masks, ensuring frequent and thorough handwashing, eliminating raw foods (e.g., fruits and salads) from the diet, not allowing flowers or plants (which well-wishers might send) into the environment, and so forth. The medical team will also provide the patient with antibiotics and antimicrobial drugs as a preventive measure. It generally takes a month or so for the donor's stem cells to promote formation of enough blood and immune cells in the recipient for him or her to leave the protected environment.

2. Graft Versus Host Disease (GVHD)
The allogeneic transplant works largely through an effect called "graft versus tumor" (GVT), where the donor's lymphocytes identify the patient's cancer cells and destroy them. However, the donor's lymphocytes may also attack the patient's normal cells, which they might recognize as a foreign body and so a threat to be neutralized. When this happens, it is called Graft Versus Host Disease (GVHD), a complication that carries a definite mortality risk. The careful tissue matching that is done to ensure donor and recipient compatibility reduces the likelihood and potential severity of GVHD, but it cannot eliminate the risk.

The more complete the tissue matching (it is never 100%, except with identical twins), the healthier the recipient is going in, and the younger the recipient, the milder the case of GVHD is likely to be. Nevertheless, the majority of recipients will experience some degree of GVHD, despite the prophylactic drugs that the medical team administers.

GVHD occurs in two forms -- "acute" and/or "chronic." The terminology has nothing to do with the degree of severity, but rather refers to the timing. Acute GVHD occurs within the first three months, but its likelihood of occurrence diminishes somewhat with time. Chronic GVHD is what develops at some point after the period for the acute phase has passed. The risk for chronic continues for a year or more after the transplant procedure. A person who has developed and been cured of acute GVHD is still at risk for chronic, as is someone who has been symptom free even a year out.

3. Host Versus Graft Effect
Since the patient's immune system is not entirely destroyed by the conditioning regimen, it's possible for the remaining cells to reject the transplanted donor stem cells, in which case the transplant is unable to gain traction and do its work. Again, careful tissue matching between donor and recipient will reduce the likelihood of this effect to any worrisome degree, but some level of risk remains.

SUSAN'S MEDICAL TEAM

Dr. Lee Nadler - Lead oncologist and case manager - DFCI
Linda Drury - Physician's Assistant to Dr. Nadler - DFCI
Dr. Robert Soiffer - Lead transplant specialist - DFCI
Amy Joyce, Nurse Practitioner for Dr. Soiffer
Dr. Michael Grossbard - Local (NYC) oncologist and case manager - Roosevelt Hospital

Blood and Marrow Stem Cell Transplantation - a pamphlet

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Transplant Pamphlet

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http://www.scribd.com/doc/15894155/Transplant-Pamphlet?secret_password=14dot1c2s1fyv9g8j4k2

Susan's Recovery Chronicle

Wednesday, June 3, 2009

DAY +1: JAILBREAK !!!! - Continued

2 comments:

Background Information

Leukemia and Lymphoma Society-Home

Dana Farber Cancer Institute - Home

Blood and Marrow Stem Cell Transplantation - a pamphlet

National Bone Marrow Transplant Link

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Susan's disease

Susan's Transplant Procedure

Blood and Marrow Stem Cell Transplantation - a pamphlet