It has been a couple of days since I posted anything. Overall quite well. On
Friday I noticed a little red area above my central IV line that was called
a Hickman line. It continued to get worse over the afternoon so we contacted
resident who contacted interventional radiology who took out the line. It
now seems very clear that infection around that line was the source of the
early infection I had even before starting chemo. That responded to
vancomycin and I have been without fevers since then. Now that the line is
gone the area is reducing in redness and everything is improving. Worse part
is now I am stuck twice a day for blood draws; but the drawers are so good
it is not a big deal.

I am noting some additional side effects of chemo-mostly gum tenderness. But
no hair loss whatsoever yet and no diarrhea. My white counts continue very
low and I will probably need a red cell transfusion tomorrow.

I have been on the antibiotic vancomycin for around 1 week so not
surprisingly I came back with resistant organism in my gut. Unless they had
really succeeded in sterilizing my GI track any normal bacteria present
would need to be vancomycin resistant. Practically, this mean that all staff
who have any contact with me have to gown and glove. And then wash before
leaving the room. At least it assures I won¹t get any infection from the
staff!! And in a hospital the chief place you get infections are from the
doctors and nurses who carry around resistant organisms. It also means I
have to change into a fresh gown if I leave my room.

But I remain overall pretty healthy and in good spirits
Elizabeth

I am hooked up to Skype

Here with a videocamera and mike. In case anyone wants to try this. My
skype name is eaypgh
Elizabeth

Soups

I know not all of you are soup makers so some people volunteered to buy
soups. However I really can't eat them unless they are prepared exactly
according to standards given in the cooking guide and the only way to know
that for sure is if you cook it. I am sure we have soups in our freezer
prepared by me but I won't eat those either. There are a number of oddities
like no seasonings added at the end etc. So it is extremely important to
adhere exactly to these guidelines. Right now my life literally depends upon
this.
I am sure there will be many tasks down the road where your help will be
appreciated so that you can do something other than soups then.
Elizabeth

Never updated anyone today

Still feeling well but my hemoglobin was 7.7 below the critical threshold of
8, so they transfused me 2 units. Had some time to read the Science Times
and Peter visited and read a New Yorker article to me. Now just hanging out
waiting for things to continue to happen
Elizabeth

Doing well today

And will get the continuous IV infusion stopped today which will free me
from IV's and poles and pumps in between antibiotic infusions which are
every 6 hours but only 60 minutes or so
Elizabeth

Back again

Glad Peter posted the pictures but I told him some of them don't look that
cheery because look like a standard hospital room. But really what I see is
the wonderful wall with multiple photos of our garden and other close-up of
flowers and a picture Sienna and another of scenes from Greece. And I can
see out the window well to views of campus and beyond.
What he forgot to say was to bring soup to him at our home not to hospital
because that way he can manage flow and can freeze some for later if too
much etc. I wanted some soups with vegetables as a way of dealing with
absence of vegetables and fiber here. But soups don't need to be vegetarian.
Glad to know you are all in there rooting for me
Elizabeth

Food for Elizabeth

Here she is today -- looks pretty healthy to me!

Elizabeth has expressed a desire for some good soups that she could have for lunch. The food they offer for lunch just isn't what she wants so soon after breakfast -- she wants something lighter. They should be ones with lots of vegetables -- on the hospital diet it's hard to get enough fiber and vegetables -- and thoroughly cooked to be free of any bacteria, molds, etc. Here is a link to some instructions
for preparing food to be brought into the hospital -- it says it's for transplant patients, but it is designed with precautions for anyone with a compromised immune system.

So everyone can see where she is spending her days I took a few photos of the hospital room -- it's not a fine resort, but it is reasonably cheery.

Elizabeth in Glasgow

Here are a couple of nice photos of Elizabeth from the ISPNE meeting in Glasgow provided by Jill Becker.

Last day of chemo

And I am feeling perky. I continue to tolerate it all very well. But the
full effects aren't until 7 days later. Definitely low white cell counts and
hemoglobin dropping. But at this level (Hb=8,5), I am fine walking circuits
in hallways and experience no sypmptoms. But they may transfuse me soon
anyhow. Platelets low but I see other parts of clotting cascade must
compensate (like fibrinogen high) since a number of clotting times are
normal
Elizabeth

Elizabeth in Dresden

Here's a picture from a happier time -- the ISPNE meeting in Dresden last July -- sent in by Bud Collier.

I'm getting better from infection

I want to re-iterate what Peter said. I have had a fever for days and
spiking temperatures twice requiring ice packs to come under control. I am
very wary of further infections so please just call instead of in person
visits. I will soon be in the gown and glove phase to get in my room. I am
tolerating chemo very well thus far and no nausea or vomiting.
Elizabeth

Visits: PLEASE CALL FIRST!

Elizabeth wanted me to emphasize what I wrote earlier that EVERYONE should call (936-8131) before visiting. As all of you who are medical people know, the greatest risk for a leukemia patient is infection during the time that natural defenses are low, so it is critically important to keep Elizabeth's environment as sterile as possible. I know that many of you who are local really want to support her with a visit but in fact the best way to make sure she recovers is to avoid any chance of bringing in bugs.

Quick update

There's not a lot to report today. The big drugs have started flowing, but we don't expect any immediate reactions. Elizabeth has not been feeling particularly brisk the last day or so, seemingly because she has been running a fever. It has taken away her appetite and bounce. They are treating it with both Tylenol for the symptom and antibiotics for the cause. Although this may be independent, the nurse did warn us that there will be a lot of ups and downs over the next weeks as the treatment takes hold.

Bone marrow donation

Several of you have asked about being a bone marrow donor for
Elizabeth, so I wanted to provide a bit of information on this topic.
Although no final decision has been made by the doctors, it is thought
probable that after the chemotherapy, probably early in 2009, she will
need a marrow transplant.

Everyone agrees that the best source is a close relative, preferably a
sibling. Unfortunately, Elizabeth had only one brother, who died
nearly two years ago. She had no children and her parents are both
dead. Therefore, she will need an unrelated donor. Although I don't
know details, I understand that marrow comes in a large variety of
types. Elizabeth's marrow is currently being typed, and when the time
comes they will try to find a donor with the same type. The main
source is the National Bone Marrow Program, which currently has 7
million listed donors. The program has a very informative website at

http://www.marrow.org

As a summary, donors volunteer to be ready to donate when their marrow
matches the type of a patient needing a transplant. In preparation, a
potential donor registers online and orders a tissue-typing kit for
$52. This is used to obtain a swab of cheek cells which can be used to
test for type. Donors must be in the age range 18-60 and be in good
health. There's a lot of specific information on the website.

It's a pretty simple and relatively cheap process, but not designed to
volunteer to donate to any particular individual. Someone who wants to
do only that must be typed privately; one of our doctors guessed that
this might cost $1000-2000, but this may be off. We will probably be
talking to the transplant team early next week and may know more then.
In any case, my impression is that the chance of one individual
matching another is probably pretty small.

So the bottom line is that to possibly help Elizabeth find a donor you
would need to offer the same help to many other patients across the
country. Incidentally, this particular program is only USA based, but
it links with similar programs in other countries and international
donations do occur. It seems to be a good program, so you might want
to consider it.

It all begins

The chromosome transfer has been confirmed from both sources, the London lab report and the lab work here, so we are going ahead with the non-standard treatment known as FLAG, an acronym for the drugs used. Today (Thursday) will only be administered a preliminary drug (Nubigen (?)) designed to make the leukemic cells divide more quickly and therefore become more susceptible to the drugs to come designed to kill them. The first dose of these will come Friday morning.

Otherwise things have been quiet today, but there was a funny incident. Doses of all the drugs are sensitively dependent on the height and weight of the patient. These were of course measured when Elizabeth was first seen in the clinic on Monday, but today the nurse came in to get current readings. FIrst she tried to get a weight using a high-tech scale built in to the hospital bed. That gave an unreasonable reading and then the screen blanked out, so she went to the nursing station and returned with a platform scale and got a reasonable reading. Then she wanted to measure E's height. For this her equipment was a 60 inch (about 150 cm) cloth tape measure. She had Elizabeth stand next to the only free wall space in the room, the door to the corridor, and tried to use the tape to measure where her head came to. She had no straightedge to get a position on the door, there was a gap between the bottom of the door and the floor, the tape wasn't long enough, etc. It was really hilarious in the context of all the other high-tech equipment in the room. She had some explanation that she had to do it here to make sure there wasn't a gross error in the initial measurement, but none as to why she had to do it with such primitive tools. In the end she just certified that the original measurement was correct, so at least the calculations for the drugs will be accurate.

Feeling good today

As Peter mentioned I have not yet started chemotherapy and after the blood
transfusions in the UK so I have a normal hemoglobin, I feel quite fine.
Really much better than the last time most of you saw me in October, when I
was dragging around and pushing myself to do things. Feel free to call me.
If I am too tired to talk I will let you know-936-8131
Elizabth

Course of treatment

We finally had a good talk with Harry Erba, the head of the Hematology/Oncology clinic. He was the specialist who came very highly recommended. Overall it was a good conversation, although some parts seem pretty ominous. The good news is that after her transfusions in London, Elizabeth's levels of red and white cells and platelets are still quite good -- particularly the red cells which are at normal levels. 

The less good news is that it appears that her form of leukemia involves a rare defect involving interchange of chromosomes 6 and 9, for those to whom this might mean something. This has ben reported by the London people by email, but Harry will be confirming the finding in several ways -- by seeing the data from London and by analyses here of the leukemia cells. Because so many of these have entered the blood stream -- something that doesn't always happen, but is of no particular import -- these analyses can be done just on her blood samples and will probably not require another bone marrow sample. Both of these results should be in today or tomorrow, and Harry is delaying the beginning of the chemotherapy until he gets the results.

Since this chromosome defect is so rare -- it appears in about 1-2% of cases -- there is not really statistically significant data on its effect on treatment, but the "word on the street", as he put it, is that it causes a higher level of resistance to chemotherapy. Therefore, if the results are as we now believe, Harry is recommending a treatment a bit different from the "standard" one. The standard, called "3+7", consists of two drugs, one given for 3 days, the other for 7 -- I'll have to leave it to others to give the names of the drugs. The one he will probably recommend is a shorter but more intensive administration over only 4 days.

This does not imply that the result will be quicker. The expectation is that in the initial "induction" phase ELizabeth will be in the hospital for around 4 weeks. The drugs really take effect in the days after administration and essentially kill off much of the marrow, especially the diseased part. Then starts the rebuilding over a couple of weeks. During this period there is the greatest risk of infection and side effects, all of which must be closely monitored in the hospital.

A further consequence of the chromosome defect is that it is probably more likely that Elizabeth will need a bone marrow transplant. This would happen from one to four months later, partially depending on finding a good donor. The best donors are siblings, but unfortunately Elizabeth's only sibling, her brother, died almost two years ago. 

So for today we are mainly waiting until enough of the results are in to make a final decision on the treatment.

Visits and Phone

For the time being Elizabeth wants to keep visits to a minimum. In addition to keeping up her strength, with leukemia one of the greatest dangers is infection at a time when natural defenses are compromised. But she is happy to take phone calls at 734-936-8131.

Background

Elizabeth was admitted to the hospital around 6 PM this evening. I thought a blog would be the easiest way to keep informed E's many friends around the world.

Many of you know some of the background, but to put everyone on an equal footing, here is some further information. Since the beginning of September we have been living in London -- in a flat (I'm trying to learn British!) in central London. This was E's sabbatical, and as an emeritus (permanent sabbatical) I was free to follow her. Our flat was on the third floor and from the beginning E seemed to notice that climbing the stairs seemed a bit harder than she expected, but being a trouper she just thought that she was a bit out of shape. A September turned into October she felt a bit under the weather and thought that she had some nasty virus that just wouldn't go away. She came back to Ann Arbor for a week in mid-October, and felt tired most of the time, but kept up a normal schedule including doing some work in our neglected garden. 

A few days after she returned to London, she was scheduled to give a talk in a seminar at UCL. She did give the talk, but felt so tired at the end that she had to call off the question period and got really exhausted getting back home on the Underground. She still called it a virus, but over the next week things began to get much worse -- she began to be barely able to climb the stairs in the flat -- it is on several levels -- and was vomiting and dead tired. This finally led to her admitting on Friday November 7 that she needed to be seen by a doctor.

A few weeks earlier I had located the NHS practice that served our neighborhood -- I wanted to get the free flu shot to which I seemed to be entitled -- and I went over to register her. We had seen that the practice claimed to offer home visits, but as Americans, for whom such a thing is a distant memory, we were skeptical. However it was true and a very nice doctor showed up at our flat that very afternoon. She thought it was an ear infection and prescribed some meds. 

By Monday nothing had improved, so we called the practice and the same doctor came that afternoon. She still thought it was something relatively benign, but just to make sure, she drew some blood to send to the lab. About 6 that evening we got a call from someone on night duty saying that the lab had been alarmed at the results and wanted someone to see her still that evening. Another doctor came around 8 to tell us that the blood tests had shown very low levels of all of red cells, white cells and platelets and that E. needed to go to the hospital (St. Bartholemews) immediately to get a blood transfusion. We took a cab over, she was very quickly admitted and within a couple of hours was getting blood. Over the next 2 days she got 6 units of blood, had a bone marrow assay and was pretty definitively diagnosed with acute myeloid leukemia. 

We discussed the options with the hematologists at the hospital. They rather preferred to keep her there for treatment, but came to understand that we would strongly prefer to return home for what promised to be a rather long treatment. Through UM Email contacts we got a very strong recommendation for Dr. Harry Erba at the UM Cancer Center. The Barts doctors got in touch with Dr. Erba and were convinced that he would take good care of E. We changed our plane reservations and flew home on Friday 14 November. 

Since it was the weekend, they didn't want to see us until Monday (today). We went to Dr. Erba's clinic at 1 PM today and saw a range of his coworkers -- he himself was at a conference in Philadelphia and will first be in to see E. tomorrow morning. 

It has all been very fast and we are still somewhat in shock. We came away very impressed by the NHS and all the more convinced that the only way to solve America's health care crisis is with a single-payer system. Not only was the NHS care quick and thorough, it was accompanied by essentially no unnecessary bureaucracy and paperwork.