Sue Charen

Feeling a little bit better

Sue is still getting fevers, but they haven't gotten as high today. Plus the abdominal pain is likely to be  muscular-skeletal as opposed to be organ related. And the pain is not as pronounced as it was yesterday. And Sue ate a bit more today and was more awake.

A Close Shave

Sue started losing her hair last night. Rather than wait for it all to come out, Sue had the Image Recovery folks come and shave it all off (this is what she did last year after chemo).

Unfortunately, in addition to the fevers, Sue is enduring some abdominal pain. The doctors are not sure what is causing the pain, but have done some tests that don't show anything serious. She will get more anti-biotics and pain-killers. It is likely to be a couple of weeks, before a new immune system shows up.

We have started to glue (with glue dots) the many cards Sue has recently gotten to the wall.

Unexplained Fevers

Sue has been having fevers that come and go. Sometimes the fevers come with or cause severe nausea. She is getting a full suite of antibiotics and none of the blood cultures so far show infection. So with Tylenol and strong anti-nausea drugs, Sue is sleeping through some of it.

Tidbits

Sitting in a hospital for days and days can be a little numbing. Fortunately I can now surf (and update the blog). Sue has recovered a bit from the two days of chemo, but has had a couple fevers.

Pumps
Sue is constantly hooked up to various fluids being dripped or pumped in. Today she received two units of red blood and two units of platelets as well as various antibiotics, hydration, anti-fungal, potassium.... And then about every twenty minutes the alarm on one of the two pumps goes off which then necessitates calling for a nurse.

Pills
Although many medications are provided by IV, there are quite a few in pill form. Sue is so proficient she normally only uses a straw for the liquid to swallow them down.

Indignities
Patients quickly learn to give up much of their dignity as teams of techs, nurses, doctors, cleaners, dietitians, and others show up while the patient is vomiting, in the bathroom, undressed, unkempt, upset, tired...

I recommend reading this short article by a doctor describing his own bone marrow transplant. http://www.annals.org/cgi/reprint/132/7/589.pdf

Construction
Outside of the window is a huge construction site for the new hospital building and children's hospital. We have watched the progress since September when we would see it from the hallways. Now we see hours of it: cranes twirling with heavy loads, constant digging and drilling to create a foundation. The men with hardhats look small from our fifth floor and them another three stories below the ground level.

Meals
It seems unfair to kvetch about the hospital food, and cliched, especially since everything else is so good but.... sometimes Sue finds the food edible. Anyway, there is a pantry filled with cereals, drinks, soups and individually sealed slices of bread. Sue's appetite returned after about two days of not eating during the chemo.

Chemo Pain

Today Sue is enduring the first of two days of chemo. Despite all the anti-nausea and pain drugs Sue has experienced nausea and some headaches. Fortunately, the meds are helping Sue to sleep through most of it. Tomorrow is the last day of general chemo that Sue should have to ever take. Although she will need additional lumbar punctures with prophylactic chemo for the spinal column and Gleevec, this is supposed to be the end of chemo as long as she stays in remission. We are hoping.

Day 1

The doctors call this Day 1 for the transplant. Sue will receive chemo again on days 3 and 4. Sue's fever from last nights transplant is long gone and generally Sue is feeling good.

(note on those that get this by email. the service that sends it out had problems this week and may have skipped a couple days postings)

New Birthday?

Some people consider getting a new bone marrow/blood system like having a new birthday. In that case, June 21st , the first day of summer is Sue's new birthday. The marrow arrived just after 11pm and Sue received it by transfusion (almost done as I write this). Sue had no immediate reaction (it is a different blood type) which is very good. We are all very happy that the wait is over and that we can begin this next phase of the cure. HIP HIP HOORAY!

Now starts a 60-90 day period that the doctors and nurses (and they have done a great job) will be watching very closely for infections and Graft Versus Host disease.

Update: Sue had a reaction of chills, fever and nausea for which she got some medication and a slowdown of the transplant. She now feels much better and the transplant is finished.

A Rough Day of Rest

Today was supposed to be a day of rest between the chemo and transplant. However, Sue was very nauseous much of the day and fortunately got a bit of sleep to get through it.

2 Days

Sue has been getting the second chemo drug for two days. It has caused some nausea in the morning as well as headaches. Today is a rest day before the transplant.

A bone marrow transplant is a very simple procedure, essentially a transfusion. However, as the blood types are incompatible, there is a chance for a reaction. So the nurses and doctors will administer other drugs to diminish the reaction and even slow the transfusion if needed. From this point on Sue will have a mixture of blood types, though it is possible for it to convert over to the new one completely eventually.

It will probably start late Thursday and may take an hour or all night.

Once it is done, the stem cells from the marrow will find their way to Sue's bones to form new marrow, usually about three weeks. Marrow is the substance in our bones that produces all of our blood, red, white and platelets. Sue will require several red blood and platelet infusions for a few months.

After the marrow takes root, "engraftment," then the doctors will be on the lookout for graft versus host disease (GVHD). The protocol that Sue is on is supposed to reduce the severity of GVHD. Sue will receive additional chemo a couple days after the transplant as part of this protocol.

Thanks again to everyone for your good thoughts and cards.

Saturday and Sunday

Sue is doing OK so far with the chemo. She is doing laps (walking around the unit).

Also we have had a few visitors, both relatives and friends.