Happy New Year!

The results from the measurements on Monday are great. The blood levels of red and white cells and platelets are very good and the bone marrow biopsy shows that she is really in remission. As far as we know this does not change the plans for a new series of chemotherapy treatments next week, but for now she is making as good progress as possible. 

We want to thank everyone for tremendous support and help in the less-than-ideal (not only because of the events discussed here) 2008 and wish you all a greatly improved 2009.

Merry Christmas to all

Not too much going on right now -- Elizabeth had a blood sample yesterday that was pretty normal -- her levels are currently stabile in a normal range. The real info will come from the marrow biopsy next Monday. We are looking forward to a quiet Christmas. We were supposed to be in Germany with my daughter and granddaughters now, but at least we are maintaining one tradition -- I am reading the Dickens Christmas Carol to the girls, one Stave a day, over the internet -- via either Skype or iChat, whichever has the better connection. It works amazingly well.

Some of you noticed the comment by Isabella Heuser and Bud Collier some time back that they were going to the Nobel Prize ceremony in Stockholm. Isabella is the psychiatry chair at the Free University of Berlin and her consort Bud is an American economist who is a longtime friend of Paul Krugman, the winner of the 2008 Nobel Prize in economics. Paul invited them to the award ceremony and they provided a few pictures of the event.

So far there has been one response to the soup recipe request. As they come in they will be added to the Soup Page.

Recipes

For a while, life is settling into a normal routine -- it's a welcome change. We are home and having something like a normal life. The schedule now is that a bone marrow biopsy will be taken on December 29 to assess how well the first round of chemo worked. Then probably the second round of (outpatient) chemo will begin on January 5. This will be a 3-4 day protocol and presumably will not lower the blood counts nearly as much as the first round. We have no idea where things go from there.

We are still enjoying the many soups that were brought. Some will be saved for the next hospital stay -- assuming that the marrow transplant will happen --  but some are finding use now. They are all so good that I thought it might be of interest to the wider audience (as well as us!) to have recipes. If those of you that brought soups could email me the recipes I will post them for everyone to enjoy. We have something of a community here, and this is one nice thing we could share.

Update on first day home

I went in this morning for a repeat blood count and things looking really good.  White count over 5000 and neutrophils over 4000. Plus, my hemoglobin and platelets have increased since yesterday morning-hemoglobin up to 10.6. At 12.0,  I will be back to normal. So it is clear my bone marrow is making red cells now and also platelets!!!
I went for a small walk (1 mile) this afternoon and didn’t get tired at all. Been doing laundry and other things so feeling really good. My bone marrow to see how well  chemo worked is scheduled for Dec 29
Elizabeth

Home at last

With a total white count of 3.8 and an ANC of 3.5, Elizabeth was discharged around noon today. It is great to have her home again. She is in good shape if a bit tired and still feeling the need to guard against all sorts of infections. But food restrictions are much eased (even a drop or two of wine is allowed!) and she can have limited contact with people.

Of course, this is hardly the end of the story -- she will be having regular appointments and blood draws in the Cancer Center for the next few weeks leading up to the next round of chemotherapy, which we understand will be done as an outpatient. Then in the distance is the probable ordeal of a bone marrow transplant -- if a suitable donor can be found. But for now we're just enjoying at least a semblance of normal life.

Further updates

Well my neutrophil count was up to 1.0 last night and at 1.0 this AM. My
total white count was 1.5 with lymphocytes making a comeback. I am no longer
"neutropenic" which affects my diet. As long as all goes well I should be
discharged tomorrow. They will probably give me red cell transfusion first
since my red cells are falling and I will likely need it within the next few
days. I will need to make frequent visits to cancer center for blood draws
and possible transfusions
Elizabeth

White counts

Still rising. Today's white count was 0.8 with ANC (absolute neutrophil
count) of 0.6. I will be able to go home when the latter number is about 1!!
Elizabeth

Glimmer of hope

It was day 21 yesterday and last night my white count finally moved from 0.3
to 0.4. This AM it was 0.5 so clearly some suggestion my white count is
recovering. Hopefully still better tomorrow. My hemoglobin is holding steady
to dropping slowly, suggesting I am making some red cells. Little sign of
platelets yet
Elizabeth

Update on everything

Still engaged in the waiting game. White count still very low. Can take as
long as 21 days to start back and today is day 17. Hair is now definitively
falling out. Had Peter take a picture today and then one tomorrow-we can see
if I am bald by then. Clearly losing hair at a fast rate
Elizabeth

More of the same

The waiting goes on. There has been a slight upturn in white counts, but nothing very significant yet. Red and platelet counts continue to drop after each transfusion, so there doesn't seem to be much action there either. By the averages it is time for increases, but everyone is different, so it could still be some days. Elizabeth continues to feel fine physically, but she is getting *very* tired of being in the hospital.

For the moment we have enough soups -- the freezer is well stocked and we are experimenting with other lunch options for variation. Many thanks to all contributors. I am doing more bringing in all or part of dinners, since the hospital food is mainly inedible. Another option for us is fetching food from the hospital cafeteria, which surprisingly has some reasonable items. Tonight I'm bringing in fried spaetzle with melted cheese -- a kind of Germanic mac-and-cheese.

Rashes

For those of you who are my age, you may remember an antibacterial soap designed for infants and others called PhysoHex. It was later taken off the market because of questions of toxicity in infant monkeys. I realized in medical school, when it was one of 2 common surgical scrubs that I was allergic to it-it made me break out in a rash where it contacted my skin. Its main ingredient was names hexachlorophene. Well the soaps they gave me here are "antibacterial" and contain chlorhexaphene. Maybe my organic chemist step-daughter can tell us how closely related these really are.
A few days ago-Saturday-I developed this rash which the doctors were concerned might be a drug rash, although it was not the classic distribution. They said it might be a penicillin allergy so they should stop it and substitute a cepahalosporin type antibiotic. I convinced them to wait a day, since much of the areas were areas also where my laptop contacted my body, and having a penicillin allergy on your record could be problematic. Afterwards I learned about the soap I used containing chlorhexaphene and now switching soaps has allowed the rash to decrease.

As Peter mentioned the rest of the time here is spent in waiting with Ivs and blood draws until my counts improve
Elizabeth

Waiting game

We are now really just waiting for the chemo to finish its work and for the (hopefully) healthy marrow cells to start growing and producing blood cells. The doctor this morning said that the re-growth normally starts about 14 days after the start of the chemo, so that would be this coming Friday. Meanwhile, it's a tense but ultimately boring time -- the less that happens the better, since at this stage happenings would likely be infections for which Elizabeth currently as no defenses. To complicate matters, I have had a mild cold the last two days, so we decided that even I should not visit. I'm clearly better today, so my exile should end tomorrow. Keep those calls and Skypes coming -- as noted there is a lot of boredom to overcome.