Sue Charen

Baltimore Bound

Sue is going back for her weekly tests at Hopkins tomorrow. It usually is a long day. The nausea is still a major issue, even though it is less severe, it is a daily issue. Also, the need to get better and be able to eat and walk much more is still looming as the goal for February (the stomach flu really held Sue back). Sue is starting to get a trickle of visitors.

Also, we are actively looking for a Baltimore apartment to stay at for the duration of the bone marrow transplant. We have some friends and relatives doing the search, but if anybody is aware of a place near the hospital please let us know. Thanks very much.

Nuke the Sponges

During the chemotherapy and again after the transplant Sue will be immuno-suppressed. For this reason, visitors and health-workers all wash or Purell their hands when around Sue. We use plastic cups, paper towels and disposable cleaning wipes.There are many other precautions taken to avoid exposure to things that might cause infection.

However, I was surprised to read in the paper today that you can microwave your sponges to disinfect them. http://news.ufl.edu/2007/01/22/zap-the-bugs/ Yes, by putting your wet sponge in the microwave for a couple of minutes, you will do a good job of disinfecting them (just be careful as they will be very hot to the touch).

The Molecular Results

Sue spent the day at Johns Hopkins yesterday getting a liver MRI, getting her weekly blood tests and getting hours of potassium by IV. Fortunately, Sue got some great news from the doctor, all of the bone marrow biopsy tests including the molecular tests came back clear of leukemia. This makes going into the transplant much better.

Also Sue has been doing much better with nausea which is not to say it is not still a problem. But she is eating more, having more energy and vomiting less. She will still continue to get nightly hydration by IV. We are hoping she can get back on track for recovery prior to the transplant. She still has a way to go, but getting over the stomach flu is great.

We will be starting our search for an apartment in Baltimore for the three to six months that the transplant will take. The transplant will probably begin in March.

We should be getting the results from the liver MRI today. We are hoping that the fungal infection is improving. If not, the medication will likely change.

3:00am

Sue woke up in the middle of the night. It was probably because of one of the drugs that is supposed to help with speeding up the emptying of the stomach. My guess is that she did not sleep that well. She sleeps late normally, but today she seems sleepier than normal.

Nausea is still a problem, but Sue seems much better generally than last week. The hope is that we can get back on track on the recovery with eating and exercise.

Some Good News

There has been a lot of sleeping. Assuming that is was a stomach virus, it seems to be better. We hope that it is over finally after a week. The effort to prepare for the bone marrow transplant has been delayed, but the may be we can catch up. Sue was at Johns Hopkins yesterday getting red blood and potassium, but otherwise her "numbers" were good. Also good was the news that so far the bone marrow biopsy shows Sue is still in remission. Still waiting for the molecular test to come back.

Oh yes, they had it too

So, working carefully to decrease the medication to avoid nausea, Tuesday the anti-fungals were removed. And Tuesday, Sue started increasing exercising. Come Wednesday evening and Sue's nausea is even worse than it had been. Thursday was a blur of nausea and bathroom breaks. On Friday, no better, Sue went in for a bone marrow biopsy to check the status of her remission (results in two weeks). Nausea declined for only those hours getting a biopsy having been given extra Ativan/sedatives. The blood tests showed that Sue was doing great generally.

But when mentioning that relatives who lived hours away had heard of a stomach virus going around, the nurse said that many of the nurses there had to take days off because of a stomach virus. In that Sue had been in Monday....

So, it has been a tough four days for Sue. Usually she wakes up a couple times in the middle of the night even with bad nausea. Now she is resting with extra sedatives to let her sleep through as much of it as possible. And she still continues to get daily IV fluids to keep her from being dehydrated.

And apparently lots of people are coming down with this. So... remember, wash hands constantly, use Purell or other alcohol based waterless soaps other times and stay healthy if you can.

Winter Has Come

Just a few days ago it was 50 degrees warmer. Sue is bundled up in bed now. It has been an interesting week. Monday was a day at Hopkins, where the doctors decided to lift the anti-fungals temporarily to help with the nausea. So far no good.

Tuesday the doctors met and decided to move ahead tentatively with 60 days to the bone marrow transplant. However, Sue will have to get much better in terms of activity (staying awake at least half the day/12hrs and being able to walk much better). Sue got a walker and is doing better gliding over our floors.

Last night was tough though. It is likely to be a bumpy road ahead. Sue will take some medicine to help with gastric emptying. We are likely to change meds for nausea and the anti-fungals.

With the prospect of a March transplant in Baltimore we are starting to look for a place there. We loved the apartment we had, but it was somewhat expensive.

There are many unknowables about bone marrow transplants, but it is likely to be a three to four month long stay in Baltimore. The first month is definitely all in the hospital, and depending on how Sue is doing the balance will be staying at an apartment near the hospital and coming in every day. Sue will be very immuno-suppressed for this time and will stay that way to a major degree for at least a year (she will need to get all over her vaccines all over again after a year).

Calmer

It is Saturday morning and it is in the sixties outside, the sun is shining and Sue got through Friday without an episode of nausea. The brain MRI on Tuesday came back clean, but the gastric study showed slowness of the stomach. Next week, Sue will have a follow up gastric study.   If this condition of a slow stomach emptying is apparent, there are some medications geared to this that may help.

To combat the motion sickness element, we used a patch on Wednesday. Unfortunately, coupled with the other anti-nausea drug led to slurring and much more weakness so we pulled off the patch.

Among some visitors are Sue's brother's family from Chicago. Another brother may stop by today as well. May be Sue will go outside and sit awhile in the sunshine. More on that and other things tomorrow...

Hope in the New Year

Happy New Year!

Today was the best day in a week. Only slight nausea, plenty of drinking, some food and exercise. Tomorrow will be a long day at the hospital, filled with several tests mainly looking for the cause of the nausea.

Thanks to everyone for your wishes and help. We are hoping for a good year.

Sue is very grateful as am I.